We are pleased to present a series of teleconferences on a variety of topics regarding Employment and MS. The series is made up of six teleconferences held every other Thursday from January through March, 2012.
Each teleconference is accessible via a toll-free number. Participate in several calls or just the one that interests you. You will need to register individually for each call you wish to attend. Dial in information will be sent to you following registration. All calls will take place from 7:00 - 8:00 pm.
After the calls have taken place, audio recordings will be posted online
Topics and Dates:
January 12: A 21st Century Approach to Job Searching: Webinar
Network your way to find that next job. Learn about the role online job boards and social networking websites can play in your job search. This program will include an optional online component for those who have internet access.
The registration deadline for this call is January 5, 2012. Register online
January 26: Get Informed: Legal Protections in the Workplace
Learn about key employment laws, such as the ADA and FMLA, and how you can use them to make an informed decision about employment.
The registration deadline for this call is January 19, 2012. Register online
February 9: Managing Challenging Resumes
Do you need to restructure your resume due to gaps, layoffs, or a career change? Are you over 50 and need a resume makeover? HR professionals will address these and other resume challenges.
The registration deadline for this call is February 2, 2012. Register online
February 23: Reinvent Yourself
Hear from others living with MS who changed careers after their diagnosis, along with a vocational specialist, on how to navigate this transitional period.
The registration deadline for this call is February 16, 2012. Register online
March 8: Home-Based Employment: What Employers Want
Learn from employers about what they look for when hiring people to work from home.
The registration deadline for this call is March 1, 2012. Register online
March 22: Don't Do It Alone: Employment Resources
Learn about agencies and resources available to help you gain and maintain employment.
The registration deadline for this call is March 15, 2012. Register online
If you have any question, please contact us at 1-800-344-4867 or email amber.stalker@nmss.org.
Wednesday, December 28, 2011
Thursday, December 22, 2011
MSConnection Winter 2011
Table of Contents — Winter 2011 Issue
Picturing Disability 9
Picturing Disability
Top Stories
The National MS Society Welcomes a New President & CEO
The Promise of NOW: Annual Meeting of Members Conference & EXPO with Stanley F. Waterman Research Series
News
Picturing Disability
Madeline Russell of Medford receives Mass. Family Caregiver Honor
Pediatric MS Studies Receive Federal Support
Newly Diagnosed
Taking the Next Step After Diagnosis
Can We Talk? Newly Diagnosed Conference Calls
Programs
MS Scholarships
Get the latest!
Live Fully, Live Well — The Holistic Approach to MS
Help is a Phone Call Away
Do you have SSDI Questions???
Educational Teleconference Series 2012
MS Encompass - Get Fit!
Mapping Your Way to Wellness, Discover the Route to Living Your Best Life!
MS and Wellness
Wellness Scholarship Program
Ask the Experts
In Touch Phone Groups
Self-Help Groups
Relationship Matters
Keep S’myelin
MS Learn Online
Living with MS Support Group
Caregiver Support Group
Research
Stress and MS
Vitamin D in African Americans with MS
A Link to Herpes?
Flu Shot, or Not?
Research Advocate
Clinical Trials Update
Advocacy
Up-To-Date FAQs on the Affordable Care Act
New ADA Rules
Wanted: MS “Grasstops”!
Federal Update
Maine
Massachusetts
New Hampshire
Vermont
We Did It!
MS Activist Blog
Action Alert
Government Relations Committee
Living with MS
Walk This Way: Using Walking Poles
OK to Mix Pregnancy and MS
Volunteers
Giving Thanks
Fundraising
Want to Give at the Office?
Recent Event Re-caps
Join Us on a Journey of Hope
BC Field Hockey
Dennison Family Honors Memory of Sister with Multiple Sclerosis
Ride With Us In 2012
From Broken Back to Cycling Across America for MS Cure
Joey’s Story
Accept the Challenge
Calendar of Events - see current calendar
Classified Ads - see current listings
Picturing Disability 9
Picturing Disability
Top Stories
The National MS Society Welcomes a New President & CEO
The Promise of NOW: Annual Meeting of Members Conference & EXPO with Stanley F. Waterman Research Series
News
Picturing Disability
Madeline Russell of Medford receives Mass. Family Caregiver Honor
Pediatric MS Studies Receive Federal Support
Newly Diagnosed
Taking the Next Step After Diagnosis
Can We Talk? Newly Diagnosed Conference Calls
Programs
MS Scholarships
Get the latest!
Live Fully, Live Well — The Holistic Approach to MS
Help is a Phone Call Away
Do you have SSDI Questions???
Educational Teleconference Series 2012
MS Encompass - Get Fit!
Mapping Your Way to Wellness, Discover the Route to Living Your Best Life!
MS and Wellness
Wellness Scholarship Program
Ask the Experts
In Touch Phone Groups
Self-Help Groups
Relationship Matters
Keep S’myelin
MS Learn Online
Living with MS Support Group
Caregiver Support Group
Research
Stress and MS
Vitamin D in African Americans with MS
A Link to Herpes?
Flu Shot, or Not?
Research Advocate
Clinical Trials Update
Advocacy
Up-To-Date FAQs on the Affordable Care Act
New ADA Rules
Wanted: MS “Grasstops”!
Federal Update
Maine
Massachusetts
New Hampshire
Vermont
We Did It!
MS Activist Blog
Action Alert
Government Relations Committee
Living with MS
Walk This Way: Using Walking Poles
OK to Mix Pregnancy and MS
Volunteers
Giving Thanks
Fundraising
Want to Give at the Office?
Recent Event Re-caps
Join Us on a Journey of Hope
BC Field Hockey
Dennison Family Honors Memory of Sister with Multiple Sclerosis
Ride With Us In 2012
From Broken Back to Cycling Across America for MS Cure
Joey’s Story
Accept the Challenge
Calendar of Events - see current calendar
Classified Ads - see current listings
Funding Victories for the MS Community
As the holidays approach and the calendar year comes to an end, Congress passed and the President is expected to sign a spending bill to fund the government for the remainder of Fiscal Year (FY) 2012. The Fiscal Year officially began on October 1st and ever since, a “Continuing Resolution” has kept the government operating.
Each year, MS activists participate in the federal appropriations process—visiting and contacting their members of Congress repeatedly throughout the year to help ensure that MS research and programs important to people affected by MS continue to be funded at robust levels. Congress and the President are under tremendous pressure to cut spending in the face of historic budget deficits and while programs are being trimmed, the National MS Society is pleased to report that the ardent work of MS activists has paid off and MS research and programs will be funded at the following levels in FY 2012:
MS Research in the Congressionally Directed Medical Research Programs (CDMRP): MS research in the CDMRP will receive $3.8 million. This is a funding stream that exists solely because MS activists urged Congress to create it and with the FY 2012 funding, MS research has received a total of over $20 million through the CDMRP over five years. The CDMRP funds high-risk, high-reward research that is complimentary to the vital basic and translational research conducted at the National Institutes of Health.
Lifespan Respite: Lifespan Respite Care programs help support, expand and streamline the delivery of planned and emergency respite services supporting our nation’s 65 million family caregivers—including those who care for people living with MS. Lifespan Respite will receive $2.495 million in FY 2012, offering states more funding to sustain or enhance their statewide respite systems.
National Institutes of Health (NIH): The NIH is the single largest source of biomedical research funding in the world and sponsors a majority of the MS-related research carried out in the United States. In FY 2012, NIH funding is increased by $300 million over FY 2011 levels—with total funding of $30.7 billion. The Society is pleased that as part of NIH funding, $10 million is provided to implement the Cures Acceleration Network (CAN) that will help speed the translation and application of discoveries and get effective therapies to the people that need them quicker.
Food and Drug Administration (FDA): FY 2012 funding for the FDA was finalized in mid-November as part of a separate package and the FDA will fortunately receive a $50 million increase over last year’s level—for a total of $2.5 billion. Funding for the FDA will help ensure that drugs and medical devices are safe and effective.
Social Security Administration (SSA): While the Society worked with many other advocates to increase funding for the SSA in FY 2012, the SSA will receive a $400 million cut in FY 2012--being funded at $10.984 billion. Significant cuts the SSA’s administrative budget can result in longer turnaround times for approval of disability benefits so the Society will monitor this potential impact.
Thank You! Thanks to everyone who made phone calls, sent emails, attended town meetings, joined our MS Activist blog and followed us on our @MSActivist twitter account. It’s through our collective, multi-faceted effort that we have been able to continue making progress and while we know new battles lie ahead, the Public Policy Office wants to share its appreciation for the terrific efforts of the more than 64,000 MS Activist network – you are the reason for the success detailed above. Happy Holidays and we look forward to engaging in 2012!
Each year, MS activists participate in the federal appropriations process—visiting and contacting their members of Congress repeatedly throughout the year to help ensure that MS research and programs important to people affected by MS continue to be funded at robust levels. Congress and the President are under tremendous pressure to cut spending in the face of historic budget deficits and while programs are being trimmed, the National MS Society is pleased to report that the ardent work of MS activists has paid off and MS research and programs will be funded at the following levels in FY 2012:
MS Research in the Congressionally Directed Medical Research Programs (CDMRP): MS research in the CDMRP will receive $3.8 million. This is a funding stream that exists solely because MS activists urged Congress to create it and with the FY 2012 funding, MS research has received a total of over $20 million through the CDMRP over five years. The CDMRP funds high-risk, high-reward research that is complimentary to the vital basic and translational research conducted at the National Institutes of Health.
Lifespan Respite: Lifespan Respite Care programs help support, expand and streamline the delivery of planned and emergency respite services supporting our nation’s 65 million family caregivers—including those who care for people living with MS. Lifespan Respite will receive $2.495 million in FY 2012, offering states more funding to sustain or enhance their statewide respite systems.
National Institutes of Health (NIH): The NIH is the single largest source of biomedical research funding in the world and sponsors a majority of the MS-related research carried out in the United States. In FY 2012, NIH funding is increased by $300 million over FY 2011 levels—with total funding of $30.7 billion. The Society is pleased that as part of NIH funding, $10 million is provided to implement the Cures Acceleration Network (CAN) that will help speed the translation and application of discoveries and get effective therapies to the people that need them quicker.
Food and Drug Administration (FDA): FY 2012 funding for the FDA was finalized in mid-November as part of a separate package and the FDA will fortunately receive a $50 million increase over last year’s level—for a total of $2.5 billion. Funding for the FDA will help ensure that drugs and medical devices are safe and effective.
Social Security Administration (SSA): While the Society worked with many other advocates to increase funding for the SSA in FY 2012, the SSA will receive a $400 million cut in FY 2012--being funded at $10.984 billion. Significant cuts the SSA’s administrative budget can result in longer turnaround times for approval of disability benefits so the Society will monitor this potential impact.
Thank You! Thanks to everyone who made phone calls, sent emails, attended town meetings, joined our MS Activist blog and followed us on our @MSActivist twitter account. It’s through our collective, multi-faceted effort that we have been able to continue making progress and while we know new battles lie ahead, the Public Policy Office wants to share its appreciation for the terrific efforts of the more than 64,000 MS Activist network – you are the reason for the success detailed above. Happy Holidays and we look forward to engaging in 2012!
Monday, December 12, 2011
Urge Congress to Continue Access to Rehabilitation Services in Medicare
We need your help to protect rehabilitation services in Medicare! Without Congressional action, caps may be placed on outpatient physical, speech and occupational therapy services.
In an effort to save money, Congress passed legislation in 1997 capping the outpatient physical, speech, and occupational therapy services to which Medicare beneficiaries are eligible each calendar year. This placed an undue burden on many individuals with MS and other diseases whose annual costs for these services exceed the cap.
To alleviate this problem, Congress created an exceptions process for patients when therapy is a medical necessity. Unfortunately, the exceptions process is temporary and must be periodically reauthorized by Congress. If the exception process is not reauthorized, beneficiaries may face the choice between forgoing care, paying out-of-pocket for services, or traveling an unreasonable distance to receive care.
Congress only has until December 31 to reauthorize the current exceptions to the therapy caps -- and Congress may only be in session for a handful of days before the end of the year, so we need your help taking action now! Your members of Congress can help make sure this happens. Contact them today and urge them extend the exceptions process and ensure continued access to rehabilitative therapy in Medicare!
In an effort to save money, Congress passed legislation in 1997 capping the outpatient physical, speech, and occupational therapy services to which Medicare beneficiaries are eligible each calendar year. This placed an undue burden on many individuals with MS and other diseases whose annual costs for these services exceed the cap.
To alleviate this problem, Congress created an exceptions process for patients when therapy is a medical necessity. Unfortunately, the exceptions process is temporary and must be periodically reauthorized by Congress. If the exception process is not reauthorized, beneficiaries may face the choice between forgoing care, paying out-of-pocket for services, or traveling an unreasonable distance to receive care.
Congress only has until December 31 to reauthorize the current exceptions to the therapy caps -- and Congress may only be in session for a handful of days before the end of the year, so we need your help taking action now! Your members of Congress can help make sure this happens. Contact them today and urge them extend the exceptions process and ensure continued access to rehabilitative therapy in Medicare!
Friday, December 2, 2011
Federal Focus - December 2011
The National MS Society is incredibly grateful to our strong and bold network of over 64,000 MS activists across the country who advocate year-round for policies that will improve the lives of people living with MS. We wish everyone a very happy holiday season and look forward to continuing to work together next year!
Society Submits Recommendations as Funding Levels are Finalized
Each year, Congress is tasked with passing the federal budget that funds federal departments, agencies, and programs. Through the federal budget cycle, funding levels for agencies and programs important to people living with MS like Medicare, Medicaid, Social Security, and the National Institutes of Health are decided—which in turn, impact access to health and other services like respite care and the amount of funding available for MS research. This complex process is supposed to be completed each year by the start of the fiscal year—October 1—but in the recent past, has not been. Congress has instead passed what is known as a “Continuing Resolution” (CR) that maintains or "flat funds" programs to give Congress more time to complete appropriations.
The federal government is currently operating under one of these CRs that is in place through December 16. Over the next few weeks, Congress will be deciding whether to wrap remaining appropriations bills into a large package called an “omnibus” or pass another CR. Whichever path is selected, to help ensure that programs and services for people with MS receive adequate funding, the Society is sending a letter to Congressional leadership and appropriators to recommend robust levels for the following: MS research in the Congressionally Directed Medical Research Programs (CDMRP), the National Institutes of Health (NIH), a new program aimed at expediting development of effective drugs called the Cures Acceleration Network (CAN), the Lifespan Respite Care Program that supports family caregivers, and the Social Security Administration. Funding for another Society priority—the Food and Drug Administration—has already been finalized and fortunately received a $50 million increase over last year’s level.
With Fade-Out of the Super Committee, Across-the-Board Cuts Expected
As part of the agreement to raise the debt ceiling this past summer, Congress created the Joint Select Committee on Deficit Reduction, otherwise known as the ‘Super Committee.’ It was tasked with identifying $1.2 trillion in budget savings over the next ten years. The committee had a hard deadline of November 23 to bring forward a proposal but on November 22 the co-chairs announced they were unable to come to an agreement. Now all the focus is on what happens next.
Under the law, there will be automatic across-the-board cuts, known as sequestration, beginning January 1, 2013, to meet the $1.2 trillion over ten years target--with half of the cuts coming from defense spending and half from non-defense spending. Medicaid, Social Security, and Medicare beneficiaries are exempt from these cuts but it is possible that cuts to administrative costs within those programs could make things like SSDI submissions longer to approve. The cuts impacting Medicare will hit the providers – they face up to a 2% reduction annually. Other areas of the budget important to people living with MS, like the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and the Centers for Disease Control (CDC) could face significant cuts. The Congressionally Directed Medical Research Programs (CDMRP)--which fund high risk, high reward research including research into MS--may also be hit.
Congress could pass another law to alter the sequestration, or cancel it altogether, but President Obama has taken a hard-line stating that he would veto any effort to alter the Budget Control Act and the automatic cuts. The Obama Administration is likely hopeful that such a stance will get Congress back to the negotiating table to come up with a workable plan to achieve at least $1.2 trillion in savings. For more details on how sequestration will work, we urge you to read this
Society Submits Recommendations as Funding Levels are Finalized
Each year, Congress is tasked with passing the federal budget that funds federal departments, agencies, and programs. Through the federal budget cycle, funding levels for agencies and programs important to people living with MS like Medicare, Medicaid, Social Security, and the National Institutes of Health are decided—which in turn, impact access to health and other services like respite care and the amount of funding available for MS research. This complex process is supposed to be completed each year by the start of the fiscal year—October 1—but in the recent past, has not been. Congress has instead passed what is known as a “Continuing Resolution” (CR) that maintains or "flat funds" programs to give Congress more time to complete appropriations.
The federal government is currently operating under one of these CRs that is in place through December 16. Over the next few weeks, Congress will be deciding whether to wrap remaining appropriations bills into a large package called an “omnibus” or pass another CR. Whichever path is selected, to help ensure that programs and services for people with MS receive adequate funding, the Society is sending a letter to Congressional leadership and appropriators to recommend robust levels for the following: MS research in the Congressionally Directed Medical Research Programs (CDMRP), the National Institutes of Health (NIH), a new program aimed at expediting development of effective drugs called the Cures Acceleration Network (CAN), the Lifespan Respite Care Program that supports family caregivers, and the Social Security Administration. Funding for another Society priority—the Food and Drug Administration—has already been finalized and fortunately received a $50 million increase over last year’s level.
With Fade-Out of the Super Committee, Across-the-Board Cuts Expected
As part of the agreement to raise the debt ceiling this past summer, Congress created the Joint Select Committee on Deficit Reduction, otherwise known as the ‘Super Committee.’ It was tasked with identifying $1.2 trillion in budget savings over the next ten years. The committee had a hard deadline of November 23 to bring forward a proposal but on November 22 the co-chairs announced they were unable to come to an agreement. Now all the focus is on what happens next.
Under the law, there will be automatic across-the-board cuts, known as sequestration, beginning January 1, 2013, to meet the $1.2 trillion over ten years target--with half of the cuts coming from defense spending and half from non-defense spending. Medicaid, Social Security, and Medicare beneficiaries are exempt from these cuts but it is possible that cuts to administrative costs within those programs could make things like SSDI submissions longer to approve. The cuts impacting Medicare will hit the providers – they face up to a 2% reduction annually. Other areas of the budget important to people living with MS, like the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and the Centers for Disease Control (CDC) could face significant cuts. The Congressionally Directed Medical Research Programs (CDMRP)--which fund high risk, high reward research including research into MS--may also be hit.
Congress could pass another law to alter the sequestration, or cancel it altogether, but President Obama has taken a hard-line stating that he would veto any effort to alter the Budget Control Act and the automatic cuts. The Obama Administration is likely hopeful that such a stance will get Congress back to the negotiating table to come up with a workable plan to achieve at least $1.2 trillion in savings. For more details on how sequestration will work, we urge you to read this
Monday, November 28, 2011
Be Part of the Worldwide Movement:
An international instrument demonstrating the rights and dignity of persons living with disabilities, the UN Convention on the Rights of Persons with Disabilities celebrates its fifth anniversary on December 3rd. As part of a worldwide campaign, the National MS Society is joining other international MS organizations in an online petition asking employers and decision makers to remove the barriers that prevent people with MS from finding and staying in work. Click here to sign this collaborative petition today.
Work is a fundamental aspect of our lives. It provides not only a salary, but a sense of self-worth, an opportunity to lead an independent life and to be a fully integrated member of society. People living with multiple sclerosis (MS) and other chronic, fluctuating diseases are often marginalized by society and their rights to access work are at times not recognized by employers or safeguarded by law in their country. Some barriers to work can be easily removed through small changes to the workplace. Flexible hours, seated rather than standing work and a place to rest during the day could be the differences that enable some people with MS to stay in work for longer.
To play a significant role in the worldwide MS movement, click here to take a few minutes today and sign this online petition. The petition--which urges positive changes that will enable people with MS to work--will be delivered to the High Commissioner for Human Rights Navanethem Pillay. The High Commissioner's office leads the global effort in identifying, highlighting and developing responses to today's human rights challenges. It is a simple but important step
Work is a fundamental aspect of our lives. It provides not only a salary, but a sense of self-worth, an opportunity to lead an independent life and to be a fully integrated member of society. People living with multiple sclerosis (MS) and other chronic, fluctuating diseases are often marginalized by society and their rights to access work are at times not recognized by employers or safeguarded by law in their country. Some barriers to work can be easily removed through small changes to the workplace. Flexible hours, seated rather than standing work and a place to rest during the day could be the differences that enable some people with MS to stay in work for longer.
To play a significant role in the worldwide MS movement, click here to take a few minutes today and sign this online petition. The petition--which urges positive changes that will enable people with MS to work--will be delivered to the High Commissioner for Human Rights Navanethem Pillay. The High Commissioner's office leads the global effort in identifying, highlighting and developing responses to today's human rights challenges. It is a simple but important step
Sunday, November 6, 2011
ASK THE EMPLOYMENT SPECIALIST: TELEPHONE Q&A SESSIONS
Do you have an employment question you would like answered?
Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work?
On November 16 and December 14, employment specialist Barbara McKeon, CRC, LMHC, Director of Employment for the NYC - Southern NY Chapter of the National MS Society, will be available to address your questions regarding employment concerns for people living with MS.
Participants may register for any one session of their choice:
November 16 6 p.m. – 7 p.m.
December 14 12 p.m. – 1 p.m.
Dial-in information will be provided with registration confirmation. Participants will be asked to present their question in advance during registration.
Register online or for more information, call 1-800-344-4867 and have your question ready!
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work?
On November 16 and December 14, employment specialist Barbara McKeon, CRC, LMHC, Director of Employment for the NYC - Southern NY Chapter of the National MS Society, will be available to address your questions regarding employment concerns for people living with MS.
Participants may register for any one session of their choice:
November 16 6 p.m. – 7 p.m.
December 14 12 p.m. – 1 p.m.
Dial-in information will be provided with registration confirmation. Participants will be asked to present their question in advance during registration.
Register online or for more information, call 1-800-344-4867 and have your question ready!
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
Lifespan Respite Reauthorization Introduced to Support Family Caregivers
Last week, Representatives Jim Langevin (RI-2) and Cathy McMorris Rodgers (WA-5) introduced legislation to reauthorize the Lifespan Respite Care Program--a program enacted in 2006 to help support our nation’s 65 million family caregivers.
Up to one quarter of individuals living with MS will require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver, becoming part of the invaluable network of family caregivers that provide approximately 80% of this nation’s long-term care. Family caregivers allow people with MS or those living with other chronic conditions to remain in the home. Caregiving can be challenging however, and respite—or temporary relief from the daily routine and stress of providing care—is necessary to keep the caregiver and the family healthy.
The Lifespan Respite Care Program provides states with funding to establish or enhance statewide respite systems that improve access to quality respite care. The bipartisan legislation being championed by Representatives Langevin and McMorris Rodgers continues the program and its funding. November is National Family Caregiver Month, so whether you are a caregiver yourself or a member of the MS community, celebrate and support family caregivers by clicking here to email your U.S. Representative and urge him/her to cosponsor the Lifespan Respite Care Reauthorization Act, H.R. 3266.
Implementation of CLASS Program Suspended
The Obama Administration recently released a statement announcing that it does “not see a viable path forward” for the Community Assistance Living Services and Supports (CLASS) program, a provision of the Affordable Care Act. The intention of CLASS was to provide people with long-term care options, as well as to help relieve some of the significant burden currently on the Medicaid program, which has become the primary public source of funding for health and long-term services and supports for people with disabilities of all ages.
CLASS was intended to be a voluntary insurance program into which working adults could choose to make premium contributions through their employer or directly. If an individual were to develop functional limitations or cognitive impairments and had paid premiums for at least five years, s/he would receive a daily cash benefit to help purchase non-medical services and supports necessary to maintain community residence such as home health care, adult day care, assistive technology, and accessible transportation.
The law requires the program to be solvent for 75 years and particularly given the continued difficult fiscal climate that our country faces, the Administration has stated for months that it will not implement the program until it could be definitively classified as self-sustaining. After months of considering structural changes and actuaries crunching numbers to make the program self-sustaining, the Administration concluded it is not possible to achieve that goal at this time and therefore stopped efforts to implement the CLASS program. Earlier this week, Senator John Thune (SD) made a move to formally repeal the CLASS program, but the effort was blocked by Senator Jay Rockefeller (WV).
The National MS Society's health care reform principles called for access to high-quality long-term supports and services and as CLASS would help fulfill that goal, is a program that the Society and many other disability organizations advocated for as part of the Affordable Care Act. Though it has been determined that the CLASS program cannot be pursued at this time, with an expected surge in the aging and disabled population and a corresponding increased need for long-term care in our nation's future, it is critical to remain focused on developing fiscally sound, workable solutions to the United States' long-term care dilemma. The Society remains committed to collaborating with our partners in the disability community and key decision makers to ensure that people with disabilities and all individuals needing them have meaningful access to appropriate and affordable long-term services and supports.
Medicare Prescription Drug Open Enrollment – Act by December 7
If you receive prescription drug coverage through Medicare Part D, now is the time to review your coverage choices and change to another plan, if you desire. Medicare Part D’s Open Enrollment period moved up this year and began on October 15th and ends on December 7th. This is the only time you can switch Medicare prescription drug plans during the calendar year unless you manage to qualify for a special enrollment opportunity. Current enrollees facing any changes should have received an Annual Notice of Change from their plan highlighting any modifications to their premiums or out-of-pocket expenses, as well as updates to the formulary. If you did not receive such a notice, you have the right to request it from your plan. For more information about Open Enrollment, click here.
Follow Us on Twitter
The National MS Society Public Policy Office recently created its own Twitter account as another means by which to engage and inform the public. Please follow @MSActivist and help us spread the word!
Up to one quarter of individuals living with MS will require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver, becoming part of the invaluable network of family caregivers that provide approximately 80% of this nation’s long-term care. Family caregivers allow people with MS or those living with other chronic conditions to remain in the home. Caregiving can be challenging however, and respite—or temporary relief from the daily routine and stress of providing care—is necessary to keep the caregiver and the family healthy.
The Lifespan Respite Care Program provides states with funding to establish or enhance statewide respite systems that improve access to quality respite care. The bipartisan legislation being championed by Representatives Langevin and McMorris Rodgers continues the program and its funding. November is National Family Caregiver Month, so whether you are a caregiver yourself or a member of the MS community, celebrate and support family caregivers by clicking here to email your U.S. Representative and urge him/her to cosponsor the Lifespan Respite Care Reauthorization Act, H.R. 3266.
Implementation of CLASS Program Suspended
The Obama Administration recently released a statement announcing that it does “not see a viable path forward” for the Community Assistance Living Services and Supports (CLASS) program, a provision of the Affordable Care Act. The intention of CLASS was to provide people with long-term care options, as well as to help relieve some of the significant burden currently on the Medicaid program, which has become the primary public source of funding for health and long-term services and supports for people with disabilities of all ages.
CLASS was intended to be a voluntary insurance program into which working adults could choose to make premium contributions through their employer or directly. If an individual were to develop functional limitations or cognitive impairments and had paid premiums for at least five years, s/he would receive a daily cash benefit to help purchase non-medical services and supports necessary to maintain community residence such as home health care, adult day care, assistive technology, and accessible transportation.
The law requires the program to be solvent for 75 years and particularly given the continued difficult fiscal climate that our country faces, the Administration has stated for months that it will not implement the program until it could be definitively classified as self-sustaining. After months of considering structural changes and actuaries crunching numbers to make the program self-sustaining, the Administration concluded it is not possible to achieve that goal at this time and therefore stopped efforts to implement the CLASS program. Earlier this week, Senator John Thune (SD) made a move to formally repeal the CLASS program, but the effort was blocked by Senator Jay Rockefeller (WV).
The National MS Society's health care reform principles called for access to high-quality long-term supports and services and as CLASS would help fulfill that goal, is a program that the Society and many other disability organizations advocated for as part of the Affordable Care Act. Though it has been determined that the CLASS program cannot be pursued at this time, with an expected surge in the aging and disabled population and a corresponding increased need for long-term care in our nation's future, it is critical to remain focused on developing fiscally sound, workable solutions to the United States' long-term care dilemma. The Society remains committed to collaborating with our partners in the disability community and key decision makers to ensure that people with disabilities and all individuals needing them have meaningful access to appropriate and affordable long-term services and supports.
Medicare Prescription Drug Open Enrollment – Act by December 7
If you receive prescription drug coverage through Medicare Part D, now is the time to review your coverage choices and change to another plan, if you desire. Medicare Part D’s Open Enrollment period moved up this year and began on October 15th and ends on December 7th. This is the only time you can switch Medicare prescription drug plans during the calendar year unless you manage to qualify for a special enrollment opportunity. Current enrollees facing any changes should have received an Annual Notice of Change from their plan highlighting any modifications to their premiums or out-of-pocket expenses, as well as updates to the formulary. If you did not receive such a notice, you have the right to request it from your plan. For more information about Open Enrollment, click here.
Follow Us on Twitter
The National MS Society Public Policy Office recently created its own Twitter account as another means by which to engage and inform the public. Please follow @MSActivist and help us spread the word!
Monday, October 17, 2011
Educational Teleconference Programs 2011-2012
Educational Teleconference Programs 2011-2012
Parenting Skills - Developing a Tool Kit
This teleconference will help you to identify your parenting strengths, and trouble spots in managing MS and parenting responsibilities. It will focus on the importance of communication, planning, prioritizing and developing a support network.
Speaker: Nancy Lowenstein, OT
Mount Auburn Hospital Comprehensive MS Care Center, Cambridge, Massachusetts; Assistant Clinical Professor at the Occupational Therapy Program, Boston University.
Speaker: Ronnie Hochberg, MS, CRC, LMHC
Mt. Sinai Medical Center, Department of Psychiatry New York, NY
Date: Thursday, November 10, 2011
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, November 3, 2011
Where is My Memory? Cognitive Changes in MS
This teleconference will explain cognitive issues in MS and delve into the impact of cognitive dysfunction on everyday life. Additionally, we will explore tools to help people with MS manage and adapt to their effects.
Speaker: John DeLuca, PhD
Speaker: Jeffrey Gingold, author of the Award-winning book, “Facing the Cognitive Challenges of Multiple Sclerosis” and person living with MS.
Date: Tuesday, January 24, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Tuesday, January 17, 2012
Emerging Therapies
The emergence of new MS therapies is both exciting and challenging for people living with MS and the clinicians who treat them. Our speaker, an MS specialist neurologist, will discuss the most recent information concerning newly emerging MS therapies to promote a better understanding and educate participants on treatment options.
Speaker: Stephen Krieger, MD
Corinne Goldsmith Dickinson Center for MS at Mt Sinai Medical Center, New York, NY
Date: Thursday, March 15, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, March 8, 2012
Using Assistive Technology for People Living with MS
Mark Surabian, Assistive Technology Practitioner, will discuss a variety of assistive technologies that can enable people living with MS to function better at home, at work and at leisure. He will also address resources that may be available in the community for funding of equipment.
Speaker: Mark Surabian, Assistive Technology Practitioner
Pace University, New York, NY www.Cognitechcafe.com
Date: Thursday, May 3, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, April 26, 2012
Management and Rehabilitation of Advanced MS
Dr Kraft will present a brief overview of advanced MS, current status of research and practical application of symptom management.
Speaker: George H. Kraft, M.D., M.S.
Director of the Western Multiple Sclerosis Clinical Center and Alvord Professor of MS Research; Professor, Rehabilitation Medicine and Neurology at the University of Washington in Seattle
Date: Wednesday, July 18, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Wednesday, July 11, 2012
Staying Healthy With Vitamins and Oral Supplements
Learn about the benefits of oral supplements and discuss some of the most commonly used vitamins, minerals and herbs.
Speaker: Patricia Melville, NP-C
Stony Brook MS Comprehensive Care Center, Stony Brook, NY
Date: Thursday, September 13, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, September 6, 2012
Register today! Registration is FREE.
For more information or to register, please call 1-800-344-4867, option 1 or visit the Teleconference Series page.
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
Parenting Skills - Developing a Tool Kit
This teleconference will help you to identify your parenting strengths, and trouble spots in managing MS and parenting responsibilities. It will focus on the importance of communication, planning, prioritizing and developing a support network.
Speaker: Nancy Lowenstein, OT
Mount Auburn Hospital Comprehensive MS Care Center, Cambridge, Massachusetts; Assistant Clinical Professor at the Occupational Therapy Program, Boston University.
Speaker: Ronnie Hochberg, MS, CRC, LMHC
Mt. Sinai Medical Center, Department of Psychiatry New York, NY
Date: Thursday, November 10, 2011
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, November 3, 2011
Where is My Memory? Cognitive Changes in MS
This teleconference will explain cognitive issues in MS and delve into the impact of cognitive dysfunction on everyday life. Additionally, we will explore tools to help people with MS manage and adapt to their effects.
Speaker: John DeLuca, PhD
Speaker: Jeffrey Gingold, author of the Award-winning book, “Facing the Cognitive Challenges of Multiple Sclerosis” and person living with MS.
Date: Tuesday, January 24, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Tuesday, January 17, 2012
Emerging Therapies
The emergence of new MS therapies is both exciting and challenging for people living with MS and the clinicians who treat them. Our speaker, an MS specialist neurologist, will discuss the most recent information concerning newly emerging MS therapies to promote a better understanding and educate participants on treatment options.
Speaker: Stephen Krieger, MD
Corinne Goldsmith Dickinson Center for MS at Mt Sinai Medical Center, New York, NY
Date: Thursday, March 15, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, March 8, 2012
Using Assistive Technology for People Living with MS
Mark Surabian, Assistive Technology Practitioner, will discuss a variety of assistive technologies that can enable people living with MS to function better at home, at work and at leisure. He will also address resources that may be available in the community for funding of equipment.
Speaker: Mark Surabian, Assistive Technology Practitioner
Pace University, New York, NY www.Cognitechcafe.com
Date: Thursday, May 3, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, April 26, 2012
Management and Rehabilitation of Advanced MS
Dr Kraft will present a brief overview of advanced MS, current status of research and practical application of symptom management.
Speaker: George H. Kraft, M.D., M.S.
Director of the Western Multiple Sclerosis Clinical Center and Alvord Professor of MS Research; Professor, Rehabilitation Medicine and Neurology at the University of Washington in Seattle
Date: Wednesday, July 18, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Wednesday, July 11, 2012
Staying Healthy With Vitamins and Oral Supplements
Learn about the benefits of oral supplements and discuss some of the most commonly used vitamins, minerals and herbs.
Speaker: Patricia Melville, NP-C
Stony Brook MS Comprehensive Care Center, Stony Brook, NY
Date: Thursday, September 13, 2012
Time: 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: Thursday, September 6, 2012
Register today! Registration is FREE.
For more information or to register, please call 1-800-344-4867, option 1 or visit the Teleconference Series page.
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
Wednesday, October 12, 2011
The Promise of NOW: Annual Meeting of Members Research Update & Conference
*** Less than 2 weeks left to register! ***
The Promise of NOW: Annual Meeting of Members Conference & EXPO with Stanley F. Waterman Research Update
This year’s Annual Meeting of Members will include educational workshops, a research update and a product EXPO at each of our four locations. Conference attendees will have the opportunity to visit the EXPO to learn about health, recreation, and independence products and services, and to network with others living with MS. This FREE program includes lunch. Limit 2 adult guests per registrant.
PRE-REGISTRATION IS REQUIRED.
Date: Saturday, October 29, 2011
Location – choose the site you wish to attend:
Best Western Royal Plaza Trade Center, Marlborough MA
Stanley F. Waterman Research Update- Opening Doors in the MS Research Pipeline: 20 years of Progress in MS Diagnosis and Treatment presented by Mayo Clinic Neurologist and Researcher Dr. Brian Weinshenker Winner of the 2011 John Dystel Prize for MS Research
Clarion, Portland ME
Stanley F. Waterman Research Update- How are Cognition and Fatigue Affected by MS presented by John DeLuca, Ph.D., ABPP, Professor, Dept of Physical Medicine and Rehabilitation, Dept of Neurosciences Univ. of Medicine & Dentistry of New Jersey - New Jersey Medical School
Church Landing, Meredith NH
Stanley F. Waterman Research Update- Coming Soon - a New Treatment Option for Secondary Progressive MS presented by Carolina Ionete, MD, Ph.D, University of Massachusetts Medical Center Multiple Sclerosis Clinic Neurologist & Researcher
Hilton Burlington Hotel, Burlington VT
Stanley F. Waterman Research Update- Hope Through MS Research: Recent Advances and Emerging Therapies presented by Angela Applebee, MD, Assistant Professor, University of Vermont College of Medicine, Director of the MS Center of Northern New England, Burlington, VT
Registration deadline: October 22, 2011
Agenda:
8:30 am Continental Breakfast & Registration
9:00 am Welcome & EXPO
9:30 am Workshops
12:00 noon Lunch
12:30 pm Annual Meeting
1:30 pm Stanley F. Waterman Research Presentation
Learn something new about current MS research directions, MS treatments, symptom management, resources, services & products available to you. Feel more confident in managing MS & its effects on your life. Learn something new about the National MS Society & the Greater New England Chapter and join the movement!
To register: Follow the links for the location you want to attend
Call 1-800-344-4867.
If you are not able to attend and wish to assign your proxy vote, please use this link:
Eligibility: Person with MS and adult guests.
This program not suitable for children. This program is handicapped-accessible.
The Promise of NOW: Annual Meeting of Members Conference & EXPO with Stanley F. Waterman Research Update
This year’s Annual Meeting of Members will include educational workshops, a research update and a product EXPO at each of our four locations. Conference attendees will have the opportunity to visit the EXPO to learn about health, recreation, and independence products and services, and to network with others living with MS. This FREE program includes lunch. Limit 2 adult guests per registrant.
PRE-REGISTRATION IS REQUIRED.
Date: Saturday, October 29, 2011
Location – choose the site you wish to attend:
Best Western Royal Plaza Trade Center, Marlborough MA
Stanley F. Waterman Research Update- Opening Doors in the MS Research Pipeline: 20 years of Progress in MS Diagnosis and Treatment presented by Mayo Clinic Neurologist and Researcher Dr. Brian Weinshenker Winner of the 2011 John Dystel Prize for MS Research
Clarion, Portland ME
Stanley F. Waterman Research Update- How are Cognition and Fatigue Affected by MS presented by John DeLuca, Ph.D., ABPP, Professor, Dept of Physical Medicine and Rehabilitation, Dept of Neurosciences Univ. of Medicine & Dentistry of New Jersey - New Jersey Medical School
Church Landing, Meredith NH
Stanley F. Waterman Research Update- Coming Soon - a New Treatment Option for Secondary Progressive MS presented by Carolina Ionete, MD, Ph.D, University of Massachusetts Medical Center Multiple Sclerosis Clinic Neurologist & Researcher
Hilton Burlington Hotel, Burlington VT
Stanley F. Waterman Research Update- Hope Through MS Research: Recent Advances and Emerging Therapies presented by Angela Applebee, MD, Assistant Professor, University of Vermont College of Medicine, Director of the MS Center of Northern New England, Burlington, VT
Registration deadline: October 22, 2011
Agenda:
8:30 am Continental Breakfast & Registration
9:00 am Welcome & EXPO
9:30 am Workshops
12:00 noon Lunch
12:30 pm Annual Meeting
1:30 pm Stanley F. Waterman Research Presentation
Learn something new about current MS research directions, MS treatments, symptom management, resources, services & products available to you. Feel more confident in managing MS & its effects on your life. Learn something new about the National MS Society & the Greater New England Chapter and join the movement!
To register: Follow the links for the location you want to attend
Call 1-800-344-4867.
If you are not able to attend and wish to assign your proxy vote, please use this link:
Eligibility: Person with MS and adult guests.
This program not suitable for children. This program is handicapped-accessible.
Saturday, October 8, 2011
Ask the Employment Specialist: Telephone Q&A Sessions
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JOIN THE MOVEMENT
ASK THE EMPLOYMENT SPECIALIST: TELEPHONE Q&A SESSIONS
Do you have an employment question you would like answered?
Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work?
On October 19, November 16 and December 14, employment specialist Barbara McKeon, CRC, LMHC, Director of Employment for the NYC - Southern NY Chapter of the National MS Society, will be available to address your questions regarding employment concerns for people living with MS.
Participants may register for any one session of their choice:
October 19 12 p.m. – 1 p.m.
November 16 6 p.m. – 7 p.m.
December 14 12 p.m. – 1 p.m.
Dial-in information will be provided with registration confirmation. Participants will be asked to present their question in advance during registration.
Register online or for more information, call 1-800-344-4867 and have your question ready!
Print all
Ask the Employment Specialist: Telephone Q&A Sessions
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National MS Society, Greater New England Chapter amber.stalker@nmss.org to me
show details 4:53 PM (15 hours ago)
Images are not displayed.
Display images below - Always display images from amber.stalker@nmss.org
JOIN THE MOVEMENT
ASK THE EMPLOYMENT SPECIALIST: TELEPHONE Q&A SESSIONS
Do you have an employment question you would like answered?
Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work?
On October 19, November 16 and December 14, employment specialist Barbara McKeon, CRC, LMHC, Director of Employment for the NYC - Southern NY Chapter of the National MS Society, will be available to address your questions regarding employment concerns for people living with MS.
Participants may register for any one session of their choice:
October 19 12 p.m. – 1 p.m.
November 16 6 p.m. – 7 p.m.
December 14 12 p.m. – 1 p.m.
Dial-in information will be provided with registration confirmation. Participants will be asked to present their question in advance during registration.
Register online or for more information, call 1-800-344-4867 and have your question ready!
Friday, October 7, 2011
Federal Focus - October 2011
Weigh-in with Your Member to Protect MS Research
As many of you have probably heard, Congress has appointed a "Supercommittee," a bipartisan body consisting of six Senators and six Representatives, to find ways to reduce spending and tackle the federal deficit. This committee is tasked with drafting and voting on a proposal to find at least $1.5 trillion dollars in savings over ten years, by November 23.
Although an important task, we must ensure that federal cuts don’t harm research and critical programs for people with chronic diseases and disabilities, like MS. While the Society is advocating for many investments like Medicaid and Social Security to be protected, our community has prioritized maintaining MS research as a top priority.
Senate and House committees have until October 14 to provide recommendations to the Supercommittee. Click here to contact your members today and urge them to remind the Supercommittee of the importance in investing in MS research.
Federal Appropriations Update
This week, Congress cleared and the President signed a “Continuing Resolution” (CR) that will fund the federal government and its programs through November 18. Congress was to have completed work on its 12 annual appropriations bills by the beginning of the fiscal year--October 1. Because this did not happen, the CR grants Congressional appropriators and leadership time to determine final funding levels for Fiscal Year (FY) 2012.
The Society has been and will continue to urge robust appropriations for MS research and many programs that support people affected by MS. Last month, the Senate Appropriations Committee moved forward the Department of Defense appropriations bill, which funds the Congressionally Directed Medical Research Programs (CDMRP). This vote comes months after the House approved its bill in June. As in years past, the Senate did not include a specific line item for the MS Research Program in the CDMRP. The MS program received $3.8 million in the House Appropriations bill. The Society will continue to urge Congress to adopt the House’s appropriation as the process moves forward.
The House Appropriations Majority recently released a draft of its Labor-Health and Human Services appropriations bill that funds critical research and health programs. The draft provides $31.7 billion in program funding for the National Institutes of Health (NIH), which is $1 billion over last year’s level, while the Senate Appropriations Committee bill would provide $30.5 billion for NIH. The House draft bill also includes $2.495 million for the Lifespan Respite Care Program, which is the same funding level that the Senate Committee provides.
As November 18 approaches, stay tuned for opportunities to urge your federal lawmakers to provide meaningful support for people with MS in the FY 12 budget.
Lifespan Respite Grants
At the end of July, the U.S. Administration on Aging (AoA) announced more than $1.1 million total in grants to the following six states to implement statewide respite system to serve family caregivers: Colorado, Hawaii, Montana, New Jersey, Ohio, and Virginia. The Lifespan Respite Care Program was enacted in 2006 to increase access to and quality of respite services for some of our nation’s 65 million family caregivers, including those that support people living with MS. Just last Friday, AoA announced another $1.1 million in grants to the following six states that have received previous grants to expand their programs: Delaware, Nevada, North Carolina, Rhode Island, South Carolina, Tennessee, and Texas, and the District of Columbia. These grants stem from the program’s funding FY 2011 funding that MS activists advocated for at the Society’s 2010 Public Policy Conference.
As many of you have probably heard, Congress has appointed a "Supercommittee," a bipartisan body consisting of six Senators and six Representatives, to find ways to reduce spending and tackle the federal deficit. This committee is tasked with drafting and voting on a proposal to find at least $1.5 trillion dollars in savings over ten years, by November 23.
Although an important task, we must ensure that federal cuts don’t harm research and critical programs for people with chronic diseases and disabilities, like MS. While the Society is advocating for many investments like Medicaid and Social Security to be protected, our community has prioritized maintaining MS research as a top priority.
Senate and House committees have until October 14 to provide recommendations to the Supercommittee. Click here to contact your members today and urge them to remind the Supercommittee of the importance in investing in MS research.
Federal Appropriations Update
This week, Congress cleared and the President signed a “Continuing Resolution” (CR) that will fund the federal government and its programs through November 18. Congress was to have completed work on its 12 annual appropriations bills by the beginning of the fiscal year--October 1. Because this did not happen, the CR grants Congressional appropriators and leadership time to determine final funding levels for Fiscal Year (FY) 2012.
The Society has been and will continue to urge robust appropriations for MS research and many programs that support people affected by MS. Last month, the Senate Appropriations Committee moved forward the Department of Defense appropriations bill, which funds the Congressionally Directed Medical Research Programs (CDMRP). This vote comes months after the House approved its bill in June. As in years past, the Senate did not include a specific line item for the MS Research Program in the CDMRP. The MS program received $3.8 million in the House Appropriations bill. The Society will continue to urge Congress to adopt the House’s appropriation as the process moves forward.
The House Appropriations Majority recently released a draft of its Labor-Health and Human Services appropriations bill that funds critical research and health programs. The draft provides $31.7 billion in program funding for the National Institutes of Health (NIH), which is $1 billion over last year’s level, while the Senate Appropriations Committee bill would provide $30.5 billion for NIH. The House draft bill also includes $2.495 million for the Lifespan Respite Care Program, which is the same funding level that the Senate Committee provides.
As November 18 approaches, stay tuned for opportunities to urge your federal lawmakers to provide meaningful support for people with MS in the FY 12 budget.
Lifespan Respite Grants
At the end of July, the U.S. Administration on Aging (AoA) announced more than $1.1 million total in grants to the following six states to implement statewide respite system to serve family caregivers: Colorado, Hawaii, Montana, New Jersey, Ohio, and Virginia. The Lifespan Respite Care Program was enacted in 2006 to increase access to and quality of respite services for some of our nation’s 65 million family caregivers, including those that support people living with MS. Just last Friday, AoA announced another $1.1 million in grants to the following six states that have received previous grants to expand their programs: Delaware, Nevada, North Carolina, Rhode Island, South Carolina, Tennessee, and Texas, and the District of Columbia. These grants stem from the program’s funding FY 2011 funding that MS activists advocated for at the Society’s 2010 Public Policy Conference.
Tuesday, October 4, 2011
MSConnection Fall 2011
Table of Contents — Fall 2011 Issue
Passes For MS Logo
Passes for MS Campaign Gains Yardage for People with multiple sclerosis
Top Stories
From the President
Passes for MS Campaign Gains Yardage for People with multiple sclerosis
Annual Meeting of Members
News
Medicare “Improvement Standard” Challenged
Potential Anti-Spasticity Treatment Boosted by the Society’s Fast Forward Program
Welcome to Digital Momentum!
New Free App!
You’ll be seeing a lot more of this thing!
Judy Hallam Receives New Hampshire Governor’s Accessibility Award
Newly Diagnosed
The Benefits of Denial
Programs
Medical Student Fellowship
Regional Programs Offer Many Opportunities!
Program Highlights
Building a Life of Inclusion in Fall River
Research
Understanding CCSVI and MS
Resources to find Clinical Trials
MS NOW
Research News
Advocacy
MS Activist Blog
Action Alert
Government Relations Committee
Health Care Reform Implementation
Federal Update
Maine
Massachusetts
New Hampshire
Vermont
Volunteers
Passionate People = Productivity
Fundraising
Thank you to our sponsors!
The Golden Circle
Students conduct penny drive for MS
Ride to be Cool
Zumba
Cape Cod Getaway
NH Seacoast Escape
Bike MS Season Starts Strong!
Journey of Hope 2011
30th Annual MS Harborfest!
Fashion Plates Luncheon & Fashion Show
Boston Volvo 5K Road Race
Calendar of Events - see current calendar
Classified Ads - see current listings
Community Programs Catalog Fall 2011
Facebook Become a fan of the Greater New England Chapter on Facebook
You are receiving this email because you chose to subscribe electronically to the MS Connection. To update your email preferences, including unsubscribing from MS Connection, please click the Unsubscribe link below.
Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at http://main.nationalmssociety.org/ or 1-800-FIGHT-MS (344-4867).
Our postal address is:
National Multiple Sclerosis Society
733 Third Avenue
New York, New York 10017
Passes For MS Logo
Passes for MS Campaign Gains Yardage for People with multiple sclerosis
Top Stories
From the President
Passes for MS Campaign Gains Yardage for People with multiple sclerosis
Annual Meeting of Members
News
Medicare “Improvement Standard” Challenged
Potential Anti-Spasticity Treatment Boosted by the Society’s Fast Forward Program
Welcome to Digital Momentum!
New Free App!
You’ll be seeing a lot more of this thing!
Judy Hallam Receives New Hampshire Governor’s Accessibility Award
Newly Diagnosed
The Benefits of Denial
Programs
Medical Student Fellowship
Regional Programs Offer Many Opportunities!
Program Highlights
Building a Life of Inclusion in Fall River
Research
Understanding CCSVI and MS
Resources to find Clinical Trials
MS NOW
Research News
Advocacy
MS Activist Blog
Action Alert
Government Relations Committee
Health Care Reform Implementation
Federal Update
Maine
Massachusetts
New Hampshire
Vermont
Volunteers
Passionate People = Productivity
Fundraising
Thank you to our sponsors!
The Golden Circle
Students conduct penny drive for MS
Ride to be Cool
Zumba
Cape Cod Getaway
NH Seacoast Escape
Bike MS Season Starts Strong!
Journey of Hope 2011
30th Annual MS Harborfest!
Fashion Plates Luncheon & Fashion Show
Boston Volvo 5K Road Race
Calendar of Events - see current calendar
Classified Ads - see current listings
Community Programs Catalog Fall 2011
Facebook Become a fan of the Greater New England Chapter on Facebook
You are receiving this email because you chose to subscribe electronically to the MS Connection. To update your email preferences, including unsubscribing from MS Connection, please click the Unsubscribe link below.
Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at http://main.nationalmssociety.org/ or 1-800-FIGHT-MS (344-4867).
Our postal address is:
National Multiple Sclerosis Society
733 Third Avenue
New York, New York 10017
Friday, September 9, 2011
The Promise of NOW: Annual Meeting of Members Conference & EXPO with Stanley F. Waterman Research Update
This year’s Annual Meeting of Members will include educational workshops, a research update and a product EXPO at each of our four locations. Conference attendees will have the opportunity to visit the EXPO to learn about health, recreation, and independence products and services, and to network with others living with MS. This FREE program includes lunch. Limit 2 adult guests per registrant.
PRE-REGISTRATION IS REQUIRED.
Date: Saturday, October 29, 2011
Location – choose the site you wish to attend:
Best Western Royal Plaza Trade Center, Marlborough MA
Stanley F. Waterman Research Update- Opening Doors in the MS Research Pipeline: 20 years of Progress in MS Diagnosis and Treatment presented by Mayo Clinic Neurologist and Researcher Dr. Brian Weinshenker Winner of the 2011 John Dystel Prize for MS Research
Clarion, Portland ME
Stanley F. Waterman Research Update- How are Cognition and Fatigue Affected by MS presented by John DeLuca, Ph.D., ABPP, Professor, Dept of Physical Medicine and Rehabilitation, Dept of Neurosciences Univ. of Medicine & Dentistry of New Jersey - New Jersey Medical School
Church Landing, Meredith NH
Stanley F. Waterman Research Update- Coming Soon - a New Treatment Option for Secondary Progressive MS presented by Carolina Ionete, MD, Ph.D, University of Massachusetts Medical Center Multiple Sclerosis Clinic Neurologist & Researcher
Hilton Burlington Hotel, Burlington VT
Stanley F. Waterman Research Update- Hope Through MS Research: Recent Advances and Emerging Therapies presented by Angela Applebee, MD, Assistant Professor, University of Vermont College of Medicine, Director of the MS Center of Northern New England, Burlington, VT
Registration deadline: October 22, 2011
Agenda:
8:30 am Continental Breakfast & Registration
9:00 am Welcome & EXPO
9:30 am Workshops
12:00 noon Lunch
12:30 pm Annual Meeting
1:30 pm Stanley F. Waterman Research Presentation
Learn something new about current MS research directions, MS treatments, symptom management, resources, services & products available to you. Feel more confident in managing MS & its effects on your life. Learn something new about the National MS Society & the Greater New England Chapter and join the movement!
To register: Follow the links for the location you want to attend
Call 1-800-344-4867.
If you are not able to attend and wish to assign your proxy vote, please use this link:
Eligibility: Person with MS and adult guests.
This program not suitable for children. This program is handicapped-accessible.
PRE-REGISTRATION IS REQUIRED.
Date: Saturday, October 29, 2011
Location – choose the site you wish to attend:
Best Western Royal Plaza Trade Center, Marlborough MA
Stanley F. Waterman Research Update- Opening Doors in the MS Research Pipeline: 20 years of Progress in MS Diagnosis and Treatment presented by Mayo Clinic Neurologist and Researcher Dr. Brian Weinshenker Winner of the 2011 John Dystel Prize for MS Research
Clarion, Portland ME
Stanley F. Waterman Research Update- How are Cognition and Fatigue Affected by MS presented by John DeLuca, Ph.D., ABPP, Professor, Dept of Physical Medicine and Rehabilitation, Dept of Neurosciences Univ. of Medicine & Dentistry of New Jersey - New Jersey Medical School
Church Landing, Meredith NH
Stanley F. Waterman Research Update- Coming Soon - a New Treatment Option for Secondary Progressive MS presented by Carolina Ionete, MD, Ph.D, University of Massachusetts Medical Center Multiple Sclerosis Clinic Neurologist & Researcher
Hilton Burlington Hotel, Burlington VT
Stanley F. Waterman Research Update- Hope Through MS Research: Recent Advances and Emerging Therapies presented by Angela Applebee, MD, Assistant Professor, University of Vermont College of Medicine, Director of the MS Center of Northern New England, Burlington, VT
Registration deadline: October 22, 2011
Agenda:
8:30 am Continental Breakfast & Registration
9:00 am Welcome & EXPO
9:30 am Workshops
12:00 noon Lunch
12:30 pm Annual Meeting
1:30 pm Stanley F. Waterman Research Presentation
Learn something new about current MS research directions, MS treatments, symptom management, resources, services & products available to you. Feel more confident in managing MS & its effects on your life. Learn something new about the National MS Society & the Greater New England Chapter and join the movement!
To register: Follow the links for the location you want to attend
Call 1-800-344-4867.
If you are not able to attend and wish to assign your proxy vote, please use this link:
Eligibility: Person with MS and adult guests.
This program not suitable for children. This program is handicapped-accessible.
Federal Focus - September 2011
Tell Your Members about Priorities for People with MS, as the Supercommittee Moves Forward
Congress has just returned to Washington, D.C. from a month-long district and state work period. Before the House and Senate adjourned for this August recess, they enacted the Budget Control Act that put in place a bipartisan Congressional Joint Select Committee on Deficit Reduction that is tasked with developing recommendations for a deficit reduction package. Members have been appointed to this "Supercommittee" and a detailed timeline is included in the law, with certain deadlines that the Supercommittee must meet. The Supercommittee's first meeting happened this week and it will continue to meet over the next several weeks. By November 23, the Supercommittee must put forth its recommendations and vote on them. If a majority of the Supercommittee votes in favor of the recommendations, it then submits its proposed legislation to Congress for an ‘up or down’ vote--which must happen by December 23.
The Society has been and will continue to monitor any proposed changes to programs and services for people living with MS. As the Committee forms its recommendations, all options for reducing spending are technically on the table. As a result, the Supercommittee and then Congress could pass changes to programs like Medicare, Social Security, and Medicaid that directly or indirectly impact access to services. Another possible scenario is if the Supercommittee does not pass its recommendations, automatic across-the-board cuts would go into effect beginning in January 2013. If automatic cuts are triggered, Congress did enact a safeguard for Medicaid, Social Security, and Medicare beneficiaries whereby these benefits would not be cut. Another potential scenario is if the Supercommittee approves cuts totaling less than $1.2 trillion over ten years, automatic cuts would still be triggered to make up the difference.
As the Supercommittee continues its meetings and makes these important decisions, click here to remind your members of Congress about the importance of protecting federal programs and services for people living with MS. Members of Congress have opportunities to weigh in with the Supercommittee so be sure to email your members today!
Federal Appropriations Update
Each year, the Society advocates for robust appropriations for research institutions like the National Institutes of Health (NIH), for MS research funding streams like the Congressionally Directed Medical Research Program (CDMRP), the Lifespan Respite Care Program, and federal programs and agencies like Medicaid, Medicare, Social Security, and the Food and Drug Administration. Several months ago, the Society submitted written testimony to the House and Senate Appropriations Committees about the importance of this research and these programs for people living with MS.
Some appropriations bills have passed the House, but others have not moved significantly in either chamber. The House of Representatives has passed a Department of Defense appropriations bill that includes $3.8 million for MS research in the CDMRP and a Senate bill is expected to be marked up this month. The House Subcommittee with jurisdiction over many health-related programs was scheduled to mark up its appropriations bill today, but the markup was postponed.
The end of the fiscal year is only a few weeks away although much work remains to complete the annual federal appropriations process. While there has not been explicit direction, there is speculation that Congress could end up wrapping several different appropriations bills into what is known as an "omnibus." Stay tuned for opportunities to weigh in with your members of Congress, to ensure that MS-related appropriations receive the funding they deserve!
Congress has just returned to Washington, D.C. from a month-long district and state work period. Before the House and Senate adjourned for this August recess, they enacted the Budget Control Act that put in place a bipartisan Congressional Joint Select Committee on Deficit Reduction that is tasked with developing recommendations for a deficit reduction package. Members have been appointed to this "Supercommittee" and a detailed timeline is included in the law, with certain deadlines that the Supercommittee must meet. The Supercommittee's first meeting happened this week and it will continue to meet over the next several weeks. By November 23, the Supercommittee must put forth its recommendations and vote on them. If a majority of the Supercommittee votes in favor of the recommendations, it then submits its proposed legislation to Congress for an ‘up or down’ vote--which must happen by December 23.
The Society has been and will continue to monitor any proposed changes to programs and services for people living with MS. As the Committee forms its recommendations, all options for reducing spending are technically on the table. As a result, the Supercommittee and then Congress could pass changes to programs like Medicare, Social Security, and Medicaid that directly or indirectly impact access to services. Another possible scenario is if the Supercommittee does not pass its recommendations, automatic across-the-board cuts would go into effect beginning in January 2013. If automatic cuts are triggered, Congress did enact a safeguard for Medicaid, Social Security, and Medicare beneficiaries whereby these benefits would not be cut. Another potential scenario is if the Supercommittee approves cuts totaling less than $1.2 trillion over ten years, automatic cuts would still be triggered to make up the difference.
As the Supercommittee continues its meetings and makes these important decisions, click here to remind your members of Congress about the importance of protecting federal programs and services for people living with MS. Members of Congress have opportunities to weigh in with the Supercommittee so be sure to email your members today!
Federal Appropriations Update
Each year, the Society advocates for robust appropriations for research institutions like the National Institutes of Health (NIH), for MS research funding streams like the Congressionally Directed Medical Research Program (CDMRP), the Lifespan Respite Care Program, and federal programs and agencies like Medicaid, Medicare, Social Security, and the Food and Drug Administration. Several months ago, the Society submitted written testimony to the House and Senate Appropriations Committees about the importance of this research and these programs for people living with MS.
Some appropriations bills have passed the House, but others have not moved significantly in either chamber. The House of Representatives has passed a Department of Defense appropriations bill that includes $3.8 million for MS research in the CDMRP and a Senate bill is expected to be marked up this month. The House Subcommittee with jurisdiction over many health-related programs was scheduled to mark up its appropriations bill today, but the markup was postponed.
The end of the fiscal year is only a few weeks away although much work remains to complete the annual federal appropriations process. While there has not been explicit direction, there is speculation that Congress could end up wrapping several different appropriations bills into what is known as an "omnibus." Stay tuned for opportunities to weigh in with your members of Congress, to ensure that MS-related appropriations receive the funding they deserve!
Monday, August 29, 2011
Lives Worth Living; PBS, Oct. 27
The documentary on the Disability Rights Movement of the last 40 years
entitled "Lives Worth Living" is now completed, and scheduled for
broadcasting on Public Television under Independent Lens on October 27th,
2011 at 10:00 pm.
Please share this news release with everyone you can think of who would be
interested in knowing about this history and the people involved who tell
the story. Additional information including a poster, post cards, and web
page will be available within the next few days.
This documentary is an opportunity to celebrate the work that was done by
those who are with us, and those who have passed on, especially our
recently deceased leader Fred Fay, who was the idea man behind this
documentary.
Best wishes to all in our disability advocacy.
Elmer
Elmer C. Bartels
12 Elm Brook Circle
Bedford, MA 01730
(t) 781-275-6078
(f) 781-275-5626
Ecbartels@verizon.net
Wednesday, August 24, 2011
Why Research Funding is Important to Me
Dancing in my spring ballet recital was a tradition growing up. But, in my junior year of high school, that tradition unexpectedly came to a halt. At 16 years old, I was suddenly unable to walk, which I later discovered was a direct result of my multiple sclerosis. After hearing my diagnosis, dancing was no longer my focus; the only thing I could concentrate on was getting back on my feet.
In time, my ability to walk was restored. Regaining strength and mobility was possible for me and for so many others because of years of research that occurred previous to my diagnosis in 2006. Now at 22 and still active, I wonder where I would be without the extensive research, the innovative drugs, and the dedicated scientists who work every day for more effective treatments and ultimately to cure MS.
I am not letting my diagnosis stop me—I will pursue a career and hopefully raise a family. Like so many others living with MS, though, I would love to not constantly worry about what tomorrow will bring. As thankful as I am for the treatments people living with MS now have and the progress we have made, I still want a cure. I still dream of a world free of MS. Research is the only road to a cure.
Please help me maintain my hope for a cure by asking Congress to continue to provide research funding for the National Institutes of Health (NIH), one of the premier national institutions that conducts MS research. As Congress moves forward preparing the Fiscal Year 2012 budget, click here to email your Members of Congress and let them know that NIH research is essential to maintaining hope for all of those living with MS by advancing the search for a cure. Together, we can make a difference.
In time, my ability to walk was restored. Regaining strength and mobility was possible for me and for so many others because of years of research that occurred previous to my diagnosis in 2006. Now at 22 and still active, I wonder where I would be without the extensive research, the innovative drugs, and the dedicated scientists who work every day for more effective treatments and ultimately to cure MS.
I am not letting my diagnosis stop me—I will pursue a career and hopefully raise a family. Like so many others living with MS, though, I would love to not constantly worry about what tomorrow will bring. As thankful as I am for the treatments people living with MS now have and the progress we have made, I still want a cure. I still dream of a world free of MS. Research is the only road to a cure.
Please help me maintain my hope for a cure by asking Congress to continue to provide research funding for the National Institutes of Health (NIH), one of the premier national institutions that conducts MS research. As Congress moves forward preparing the Fiscal Year 2012 budget, click here to email your Members of Congress and let them know that NIH research is essential to maintaining hope for all of those living with MS by advancing the search for a cure. Together, we can make a difference.
Participate in an online survey about Social Support, Outcome expectations and physical activity!
Dear Friend,
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. If you have already received this email and have completed the survey, thank you! We appreciate your effort and support.
If you have not yet completed the survey, we would appreciate your participation. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. If you have already received this email and have completed the survey, thank you! We appreciate your effort and support.
If you have not yet completed the survey, we would appreciate your participation. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
Monday, August 15, 2011
Federal Focus - August 2011
Bill Reintroduced to Ensure Collection of Basic MS Data
On July 20, 2011, Representatives Chris Van Hollen (MD-8) and Michael Burgess, M.D. (TX-26) co-introduced the National Neurological Diseases Surveillance System Act (H.R. 2595). This bill was introduced with 22 bi-partisan cosponsors and acts as the companion legislation to S.425, the Senate version of the bill introduced in March 2011 by Senator Mark Udall (CO).
This legislation was introduced to try to address a basic but important question for the MS community—how many people in the United States currently live with MS? Currently, there is no accurate national data on how many Americans are living with MS. This bill will try to address this gap in knowledge by creating a surveillance system, or a database, that will collect information on the number of people who are newly-diagnosed with MS every year and how many total people are currently living with MS in the United States. The bill will create, for the first time, separate, permanent, and coordinated national databases at the Centers for Disease Control and Prevention (CDC) for diseases including MS and other neurological conditions. The information will lay a foundation that will allow researchers to better evaluate and understand disease factors, including geographic clusters of diagnoses, variances in gender ratio, changes in health care practices, and fluctuations in disease burden and population over time. Ultimately, this information will provide researchers with important information about the disease and will move studies for a cure forward.
Similar legislation was introduced last session of Congress, the National MS and Parkinson’s Disease Registries Act (H.R. 1362/S. 1273). With the help of many relentless MS activists, last session’s legislation passed the House; however, because it did not pass in the Senate, the bill must once again be considered and approved by the House.
Click here to ask your Representative to support collection of better, more comprehensive MS data and cosponsor H.R. 2595, the National Neurological Diseases Surveillance System Act.
Debt Deal Means Possible Changes Down the Road
On August 2, the President signed into law the Budget Control Act of 2011. In addition to permitting the President to raise the debt ceiling limit and avoid default, the law addresses federal spending and the deficit both through immediate changes and a process that could lead to changes down the road. To address the national deficit, federal discretionary spending has been capped through 2021; it is anticipated that this will generate nearly $1 trillion in deficit reduction.
Possible changes down the road could have a serious impact on federal programs that are important to persons living with disabilities. Just last week, a bipartisan Congressional Joint Select Committee was selected that is tasked with developing recommendations for an additional $1.2-1.5 trillion in long-term deficit reduction. Everything is theoretically on the table when developing these recommendations—including Medicare, Medicaid, and Social Security. The following members of Congress were appointed to the Committee: Senators Patty Murray (WA), John Kerry (MA), Max Baucus (MT), Jon Kyl (AZ), Pat Toomey (PA), and Rob Portman (OH) and Representatives Jeb Hensarling (TX-5), Dave Camp (MI-4), Fred Upton (MI-6), Chris Van Hollen (MD-8), James Clyburn (SC-6), and Xavier Beccera (CA-31).
Approximately one-quarter of people living with MS rely on Medicare for access to the following essential care: access to doctors, diagnostic equipment, durable medical devices, MRIs, prescription drugs, and home health care. Medicaid is another important component of the health care system--providing health coverage to 8 million individuals living with disabilities and to approximately 9 million low-income Medicare beneficiaries who depend on Medicaid to fill coverage gaps. While it is estimated that only 5-10% of persons living with MS rely on Medicaid, the services that Medicaid provide are particularly valuable. Medicaid is the primary public source of funding for long-term services and supports and also has a strong track record of providing home-and-community-based services that allow individuals with MS to live and work in their communities and avoid costlier and premature admission to institutional facilities.
This Joint Committee must approve its recommendations and put forth legislation by November 23, 2011. Congress must then vote on the legislation by December 23, 2011. If the Joint Committee fails to approve recommendations or Congress fails to pass the legislation, automatic cuts will happen across the board that in total, save $1.2 trillion. If the Joint Committee approves and Congress passes a proposal that saves less than $1.2 trillion, automatic cuts will make up the difference. The good news for disability advocates is that Congress exempted Medicaid and Social Security should these automatic cuts have to occur. Medicare providers could face up to 2% cuts, but Medicare beneficiaries' cost sharing cannot be increased and benefits may not be reduced. Significant structural changes to entitlement programs like Medicaid could happen through the Committee’s recommendations though and the Society will continue to monitor any potential impact that persons living with disabilities could face. Stay tuned for updates from the Public Policy Office and for opportunities to weigh in with your federal legislators!
ADA Celebrates its 21st Anniversary
July 26 was the 21st anniversary of enactment of the Americans with Disabilities Act (ADA). A landmark civil rights law, the ADA prohibits discrimination on the basis of disability in employment, State and local government services, public transportation, public accommodations, commercial facilities, and telecommunications. The Society’s Public Policy Office attended a celebration on Capitol Hill attended by U.S. Department of Health and Human Services Department Secretary Kathleen Sebelius and several federal legislators who were integral to the law’s passage over twenty years ago including Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5). Speakers discussed the law’s importance, the strides we have made in terms of accessibility, and the path we must continue in order to realize the ADA’s full promise of equal rights. To see pictures from the celebration and read more, visit the MS Activist Blog.
On July 20, 2011, Representatives Chris Van Hollen (MD-8) and Michael Burgess, M.D. (TX-26) co-introduced the National Neurological Diseases Surveillance System Act (H.R. 2595). This bill was introduced with 22 bi-partisan cosponsors and acts as the companion legislation to S.425, the Senate version of the bill introduced in March 2011 by Senator Mark Udall (CO).
This legislation was introduced to try to address a basic but important question for the MS community—how many people in the United States currently live with MS? Currently, there is no accurate national data on how many Americans are living with MS. This bill will try to address this gap in knowledge by creating a surveillance system, or a database, that will collect information on the number of people who are newly-diagnosed with MS every year and how many total people are currently living with MS in the United States. The bill will create, for the first time, separate, permanent, and coordinated national databases at the Centers for Disease Control and Prevention (CDC) for diseases including MS and other neurological conditions. The information will lay a foundation that will allow researchers to better evaluate and understand disease factors, including geographic clusters of diagnoses, variances in gender ratio, changes in health care practices, and fluctuations in disease burden and population over time. Ultimately, this information will provide researchers with important information about the disease and will move studies for a cure forward.
Similar legislation was introduced last session of Congress, the National MS and Parkinson’s Disease Registries Act (H.R. 1362/S. 1273). With the help of many relentless MS activists, last session’s legislation passed the House; however, because it did not pass in the Senate, the bill must once again be considered and approved by the House.
Click here to ask your Representative to support collection of better, more comprehensive MS data and cosponsor H.R. 2595, the National Neurological Diseases Surveillance System Act.
Debt Deal Means Possible Changes Down the Road
On August 2, the President signed into law the Budget Control Act of 2011. In addition to permitting the President to raise the debt ceiling limit and avoid default, the law addresses federal spending and the deficit both through immediate changes and a process that could lead to changes down the road. To address the national deficit, federal discretionary spending has been capped through 2021; it is anticipated that this will generate nearly $1 trillion in deficit reduction.
Possible changes down the road could have a serious impact on federal programs that are important to persons living with disabilities. Just last week, a bipartisan Congressional Joint Select Committee was selected that is tasked with developing recommendations for an additional $1.2-1.5 trillion in long-term deficit reduction. Everything is theoretically on the table when developing these recommendations—including Medicare, Medicaid, and Social Security. The following members of Congress were appointed to the Committee: Senators Patty Murray (WA), John Kerry (MA), Max Baucus (MT), Jon Kyl (AZ), Pat Toomey (PA), and Rob Portman (OH) and Representatives Jeb Hensarling (TX-5), Dave Camp (MI-4), Fred Upton (MI-6), Chris Van Hollen (MD-8), James Clyburn (SC-6), and Xavier Beccera (CA-31).
Approximately one-quarter of people living with MS rely on Medicare for access to the following essential care: access to doctors, diagnostic equipment, durable medical devices, MRIs, prescription drugs, and home health care. Medicaid is another important component of the health care system--providing health coverage to 8 million individuals living with disabilities and to approximately 9 million low-income Medicare beneficiaries who depend on Medicaid to fill coverage gaps. While it is estimated that only 5-10% of persons living with MS rely on Medicaid, the services that Medicaid provide are particularly valuable. Medicaid is the primary public source of funding for long-term services and supports and also has a strong track record of providing home-and-community-based services that allow individuals with MS to live and work in their communities and avoid costlier and premature admission to institutional facilities.
This Joint Committee must approve its recommendations and put forth legislation by November 23, 2011. Congress must then vote on the legislation by December 23, 2011. If the Joint Committee fails to approve recommendations or Congress fails to pass the legislation, automatic cuts will happen across the board that in total, save $1.2 trillion. If the Joint Committee approves and Congress passes a proposal that saves less than $1.2 trillion, automatic cuts will make up the difference. The good news for disability advocates is that Congress exempted Medicaid and Social Security should these automatic cuts have to occur. Medicare providers could face up to 2% cuts, but Medicare beneficiaries' cost sharing cannot be increased and benefits may not be reduced. Significant structural changes to entitlement programs like Medicaid could happen through the Committee’s recommendations though and the Society will continue to monitor any potential impact that persons living with disabilities could face. Stay tuned for updates from the Public Policy Office and for opportunities to weigh in with your federal legislators!
ADA Celebrates its 21st Anniversary
July 26 was the 21st anniversary of enactment of the Americans with Disabilities Act (ADA). A landmark civil rights law, the ADA prohibits discrimination on the basis of disability in employment, State and local government services, public transportation, public accommodations, commercial facilities, and telecommunications. The Society’s Public Policy Office attended a celebration on Capitol Hill attended by U.S. Department of Health and Human Services Department Secretary Kathleen Sebelius and several federal legislators who were integral to the law’s passage over twenty years ago including Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5). Speakers discussed the law’s importance, the strides we have made in terms of accessibility, and the path we must continue in order to realize the ADA’s full promise of equal rights. To see pictures from the celebration and read more, visit the MS Activist Blog.
Tuesday, August 9, 2011
Participate in an online survey about Social Support, Outcome expectations and physical activity!
Dear Friend,
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
click here
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
click here
Friday, July 1, 2011
Legislation Introduced to Help with Neurologist Shortage
Nearly 75% of people living with MS depend on a neurologist for regular assessment and care of MS. Without additional incentives, however, it is expected that the number of neurologists who enter the MS field will decrease considerably. In the middle of June, Congressman Michael Grimm (NY-13) along with 9 other original co-sponsors introduced the Improving Physician Access in Teaching Hospitals (PATH) Act (H.R. 2224) to address this issue and prevent a physician shortage in the United States.
Although not identical, H.R. 2224 complements S.597, which was introduced in March by Senators Amy Klobuchar (MN) and Susan Collins (ME) to allow neurologists to qualify for a payment incentive in Medicare. Varying in approach, the House version would include two components that would address the physician shortage generally by phasing in additional residency slots to participating teaching hospitals, as well as give tax incentives to practicing physicians who provide opportunities for resident rotations in their practices. The third piece of the bill specifically focuses on underserved specialties, like neurology, and allows these specialties to qualify for a Medicare incentive payment.
The National MS Society has long advocated for better access to the appropriate medical professionals for people living with MS. Neurologists provide coordinated, specialized care for people living with neurological conditions, including people living with MS. The number of American physicians entering the field of neurology, however, has decreased. Even the U.S. military has indicated that the shortage is becoming ‘critical’ as the needs of service men and women increase due to the conflicts in the Middle East. Ignoring the issue much longer will have long-lasting ramifications for people living with MS as their access to important specialized care becomes limited due to the scarcity of specialists available. Click here to email your Representative today and urge him/her to ensure the proper care of people with MS by cosponsoring H.R. 2224!
Affordable Care Act Implementation Moves Forward
As of June 24, 2011, 32 states and the District of Columbia have introduced legislation to create health insurance exchanges, or web-based marketplaces through which individuals will purchase health insurance. The Affordable Care Act, which was enacted in 2010, requires states to establish exchanges by 2014 unless state lawmakers opt for the federal government to operate one for them. Ten states’ legislatures have passed exchange legislation, while the District of Columbia and 9 states have bills still pending. Thirteen states failed to pass exchange establishment legislation prior to the close of their 2011 legislative sessions, and certain others have filed multiple exchange bills with differing provisions. Click here to learn more.
Among the many consumer protections included in the Affordable Care Act of particular interest to the MS community is the right to appeal an ‘adverse’ decision made by a health plan. The intent is for everyone to have access to the same rights to appeal. Specifically, beneficiaries are entitled to one initial or ‘internal’ appeal (in which the insurer must re-consider its previous decision to deny or limit coverage), as well as one ‘external review’ through which consumers can appeal for another round of review. These assessments should be conducted by knowledgeable individuals with no ties to the patient’s insurer. Regulations proposed by the Department of Health and Human Services that clarify the requirements and procedures that health plans must follow have generated many formal comments to HHS, as well as calls and meetings with key department personnel. For additional details about recently revised proposed rules, click here.
Congress Focused on Deficit Reduction, with Potential Impact on Health Programs
For the past several weeks, members of Congress and the Administration have been engaged in numerous conversations regarding long-term deficit reduction. A bipartisan group of Senators had been meeting Vice President Biden to try and negotiate an overall package but those talks recently broke off. There are significantly different perspectives on how best to rein in federal spending therefore the process can be very slow and cumbersome. While much of the debt and deficit deliberation has been ‘behind closed doors’, it is widely believed that major health programs, such as Medicaid and Medicare, could be dramatically affected. Both programs are vital to the health and well-being of persons living with disabilities and those living with MS.
Medicaid provides health coverage to 8 million individuals living with disabilities and to approximately 9 million low-income Medicare beneficiaries who depend on Medicaid to fill coverage gaps. Medicaid provides a variety of benefits and services to individuals living with MS, ranging from access to medical equipment like wheelchairs to providing prescription drugs. In addition, it serves as the primary public source of funding for long-term services and supports for people with disabilities of all ages, and provides access to home-and-community-based services that allow individuals with MS to live and work in their communities and avoid costlier and premature admission to institutional facilities. In addition to all seniors, Medicare provides health coverage to 8 million people living with disabilities. Currently, approximately one-quarter of people living with MS rely on Medicare as their primary payor for essential medical care. Medicare helps beneficiaries access doctors, diagnostic equipment, durable medical devices, skilled nursing, and prescription drug treatments.
It is unclear at this point exactly how these programs would be changed, but their importance to all persons living with disabilities is certain. The National MS Society has been very engaged, urging that the programs remain robust. Stay tuned for opportunities to weigh in as more specific information becomes available about potential changes or reductions to these programs.
Although not identical, H.R. 2224 complements S.597, which was introduced in March by Senators Amy Klobuchar (MN) and Susan Collins (ME) to allow neurologists to qualify for a payment incentive in Medicare. Varying in approach, the House version would include two components that would address the physician shortage generally by phasing in additional residency slots to participating teaching hospitals, as well as give tax incentives to practicing physicians who provide opportunities for resident rotations in their practices. The third piece of the bill specifically focuses on underserved specialties, like neurology, and allows these specialties to qualify for a Medicare incentive payment.
The National MS Society has long advocated for better access to the appropriate medical professionals for people living with MS. Neurologists provide coordinated, specialized care for people living with neurological conditions, including people living with MS. The number of American physicians entering the field of neurology, however, has decreased. Even the U.S. military has indicated that the shortage is becoming ‘critical’ as the needs of service men and women increase due to the conflicts in the Middle East. Ignoring the issue much longer will have long-lasting ramifications for people living with MS as their access to important specialized care becomes limited due to the scarcity of specialists available. Click here to email your Representative today and urge him/her to ensure the proper care of people with MS by cosponsoring H.R. 2224!
Affordable Care Act Implementation Moves Forward
As of June 24, 2011, 32 states and the District of Columbia have introduced legislation to create health insurance exchanges, or web-based marketplaces through which individuals will purchase health insurance. The Affordable Care Act, which was enacted in 2010, requires states to establish exchanges by 2014 unless state lawmakers opt for the federal government to operate one for them. Ten states’ legislatures have passed exchange legislation, while the District of Columbia and 9 states have bills still pending. Thirteen states failed to pass exchange establishment legislation prior to the close of their 2011 legislative sessions, and certain others have filed multiple exchange bills with differing provisions. Click here to learn more.
Among the many consumer protections included in the Affordable Care Act of particular interest to the MS community is the right to appeal an ‘adverse’ decision made by a health plan. The intent is for everyone to have access to the same rights to appeal. Specifically, beneficiaries are entitled to one initial or ‘internal’ appeal (in which the insurer must re-consider its previous decision to deny or limit coverage), as well as one ‘external review’ through which consumers can appeal for another round of review. These assessments should be conducted by knowledgeable individuals with no ties to the patient’s insurer. Regulations proposed by the Department of Health and Human Services that clarify the requirements and procedures that health plans must follow have generated many formal comments to HHS, as well as calls and meetings with key department personnel. For additional details about recently revised proposed rules, click here.
Congress Focused on Deficit Reduction, with Potential Impact on Health Programs
For the past several weeks, members of Congress and the Administration have been engaged in numerous conversations regarding long-term deficit reduction. A bipartisan group of Senators had been meeting Vice President Biden to try and negotiate an overall package but those talks recently broke off. There are significantly different perspectives on how best to rein in federal spending therefore the process can be very slow and cumbersome. While much of the debt and deficit deliberation has been ‘behind closed doors’, it is widely believed that major health programs, such as Medicaid and Medicare, could be dramatically affected. Both programs are vital to the health and well-being of persons living with disabilities and those living with MS.
Medicaid provides health coverage to 8 million individuals living with disabilities and to approximately 9 million low-income Medicare beneficiaries who depend on Medicaid to fill coverage gaps. Medicaid provides a variety of benefits and services to individuals living with MS, ranging from access to medical equipment like wheelchairs to providing prescription drugs. In addition, it serves as the primary public source of funding for long-term services and supports for people with disabilities of all ages, and provides access to home-and-community-based services that allow individuals with MS to live and work in their communities and avoid costlier and premature admission to institutional facilities. In addition to all seniors, Medicare provides health coverage to 8 million people living with disabilities. Currently, approximately one-quarter of people living with MS rely on Medicare as their primary payor for essential medical care. Medicare helps beneficiaries access doctors, diagnostic equipment, durable medical devices, skilled nursing, and prescription drug treatments.
It is unclear at this point exactly how these programs would be changed, but their importance to all persons living with disabilities is certain. The National MS Society has been very engaged, urging that the programs remain robust. Stay tuned for opportunities to weigh in as more specific information becomes available about potential changes or reductions to these programs.
FINAL REQUEST: Invitation to Participate in Housing Needs Survey
OUR HOUSING SURVEY WILL CLOSE ON JULY 15TH! IF YOU HAVE ALREADY COMPLETED THE SURVEY EITHER ON LINE OR HARD COPY, THANK YOU FOR YOUR RESPONSE. PLEASE DO NOT COMPLETE IT A SECOND TIME. If you’d still like to participate, there is still some time left. You may access the survey questions online at the link below or you may request a hard copy by responding to this email.
Dear Friend of the National MS Society, Greater New England Chapter:
We are very excited to announce that we are beginning a movement to answer your needs for accessible independent housing. As you are aware, we take pride in listening to your concerns and then work diligently for you, our friends who have MS. The awareness of these needs has led the Chapter to partner with other interested organizations and to explore the development of housing alternatives.
To learn more about the needs of people who live with MS everyday, we have developed a survey and we ask for your participation. This will add to our understanding of issues that have been reported in previous surveys that you and others have completed. Your answers will provide us with information about the many needs and desires regarding appropriate housing arrangements for people who are disabled from the effects of MS. Your input is valuable and we look forward to tabulating the results and sharing it with funding resources, government agencies and partnering organizations in moving toward our goal of providing housing opportunities.
Please know that this survey is confidential and at this time we cannot guarantee housing. This is our first step in assessing the housing needs of people who live with MS of all income levels. This information is absolutely crucial in our efforts to influence state and federal funding sources to help create housing.
Certainly, as the Chapter moves forward with any housing plans, we will contact those that have completed this survey. You may access the survey via the following link:
http://www.nationalmssociety.org/MAMHousingSurvey
The deadline for participation is JULY 15, 2011. If you prefer, we can send you a hard copy of the survey to complete and return via US Mail. Please call me to receive the printed version or if you have any questions. Thank you for taking the time to help us to collect the information we need about the housing needs of people with MS.
Sincerely,
Linda R. Guiod, RN, MSSMC
National MS Society, Greater New England Chapter
101 A First Ave.
Waltham, MA 02451
781.693.5124
Dear Friend of the National MS Society, Greater New England Chapter:
We are very excited to announce that we are beginning a movement to answer your needs for accessible independent housing. As you are aware, we take pride in listening to your concerns and then work diligently for you, our friends who have MS. The awareness of these needs has led the Chapter to partner with other interested organizations and to explore the development of housing alternatives.
To learn more about the needs of people who live with MS everyday, we have developed a survey and we ask for your participation. This will add to our understanding of issues that have been reported in previous surveys that you and others have completed. Your answers will provide us with information about the many needs and desires regarding appropriate housing arrangements for people who are disabled from the effects of MS. Your input is valuable and we look forward to tabulating the results and sharing it with funding resources, government agencies and partnering organizations in moving toward our goal of providing housing opportunities.
Please know that this survey is confidential and at this time we cannot guarantee housing. This is our first step in assessing the housing needs of people who live with MS of all income levels. This information is absolutely crucial in our efforts to influence state and federal funding sources to help create housing.
Certainly, as the Chapter moves forward with any housing plans, we will contact those that have completed this survey. You may access the survey via the following link:
http://www.nationalmssociety.org/MAMHousingSurvey
The deadline for participation is JULY 15, 2011. If you prefer, we can send you a hard copy of the survey to complete and return via US Mail. Please call me to receive the printed version or if you have any questions. Thank you for taking the time to help us to collect the information we need about the housing needs of people with MS.
Sincerely,
Linda R. Guiod, RN, MSSMC
National MS Society, Greater New England Chapter
101 A First Ave.
Waltham, MA 02451
781.693.5124
Tuesday, June 21, 2011
Act Today to Preserve Funding for MS Research
With your help over the past four years, we’ve been able to get $17 million dedicated to MS Research through the Defense Department’s Congressionally Directed Medical Research Programs (CDMRP) . This week the House of Representatives is scheduled to vote on the FY 2012 Defense Appropriations bill that includes an additional $3.8 million for MS Research. There may be efforts to reduce or completely eliminate CDMRP and lose the momentum of the cutting edge research underway. It is important that you act now to urge your Representative to continue funding for the CDMRPs!
Emerging evidence indicates a potential link between combat service and an increased incidence of MS, with one study theorizing that exposure to neurotoxins could be an environmental trigger for MS. According to a 2003 study in the Annals of Neurology, 5,345 veterans that served in Vietnam and the first Gulf War were diagnosed with MS that was deemed "service-connected." MS research in the CDMRP helps scientists better understand the causes of MS and can help us discover a cure.
Contact your Representative today and remind them of the importance of maintaining these programs that could lead to better treatments for MS in the future!
Emerging evidence indicates a potential link between combat service and an increased incidence of MS, with one study theorizing that exposure to neurotoxins could be an environmental trigger for MS. According to a 2003 study in the Annals of Neurology, 5,345 veterans that served in Vietnam and the first Gulf War were diagnosed with MS that was deemed "service-connected." MS research in the CDMRP helps scientists better understand the causes of MS and can help us discover a cure.
Contact your Representative today and remind them of the importance of maintaining these programs that could lead to better treatments for MS in the future!
Friday, June 17, 2011
Invitation to Participate in Housing Needs Survey
National MS Society, Greater New England Chapter to me
show details 9:45 AM (34 minutes ago)
Images are not displayed.
Display images below - Always display images from Linda.Guiod@nmss.org
Email not displaying correctly? View it in your browser.
JOIN THE MOVEMENT
Dear Friend of the National MS Society, Greater New England Chapter:
THIS IS A REMINDER TO COMPLETE OUR SURVEY REGARDING THE HOUSING NEEDS OF PEOPLE WITH MULTIPLE SCLEROSIS. IF YOU HAVE DIFFICULTY ACCESSING THE SURVEY ON LINE, AND WOULD LIKE A HARD COPY TO COMPLETE AND RETURN, PLEASE REPLY TO THIS EMAIL AND LET US KNOW. IF YOU HAVE ALREADY COMPLETED THE SURVEY EITHER ON LINE OR HARD COPY, THANK YOU FOR YOUR RESPONSE. PLEASE DO NOT COMPLETE IT A SECOND TIME.
Thank you!
We are very excited to announce that we are beginning a movement to answer your needs for accessible independent housing. As you are aware, we take pride in listening to your concerns and then work diligently for you, our friends who have MS. The awareness of these needs has led the Chapter to partner with other interested organizations and to explore the development of housing alternatives.
To learn more about the needs of people who live with MS everyday, we have developed a survey and we ask for your participation. This will add to our understanding of issues that have been reported in previous surveys that you and others have completed. Your answers will provide us with information about the many needs and desires regarding appropriate housing arrangements for people who are disabled from the effects of MS. Your input is valuable and we look forward to tabulating the results and sharing it with funding resources, government agencies and partnering organizations in moving toward our goal of providing housing opportunities.
Please know that this survey is confidential and at this time we cannot guarantee housing. This is our first step in assessing the housing needs of people who live with MS of all income levels. This information is absolutely crucial in our efforts to influence state and federal funding sources to help create housing.
Certainly, as the Chapter moves forward with any housing plans, we will contact those that have completed this survey. You may access the survey via the following link:
http://www.nationalmssociety.org/MAMHousingSurvey
The deadline for participation is JULY 15, 2011. If you prefer, we can send you a hard copy of the survey to complete and return via US Mail. Please call me to receive the printed version or if you have any questions. Thank you for taking the time to help us to collect the information we need about the housing needs of people with MS.
Sincerely,
Linda R. Guiod, RN, MSSMC
National MS Society, Greater New England Chapter
101 A First Ave.
Waltham, MA 02451
781.693.5124
show details 9:45 AM (34 minutes ago)
Images are not displayed.
Display images below - Always display images from Linda.Guiod@nmss.org
Email not displaying correctly? View it in your browser.
JOIN THE MOVEMENT
Dear Friend of the National MS Society, Greater New England Chapter:
THIS IS A REMINDER TO COMPLETE OUR SURVEY REGARDING THE HOUSING NEEDS OF PEOPLE WITH MULTIPLE SCLEROSIS. IF YOU HAVE DIFFICULTY ACCESSING THE SURVEY ON LINE, AND WOULD LIKE A HARD COPY TO COMPLETE AND RETURN, PLEASE REPLY TO THIS EMAIL AND LET US KNOW. IF YOU HAVE ALREADY COMPLETED THE SURVEY EITHER ON LINE OR HARD COPY, THANK YOU FOR YOUR RESPONSE. PLEASE DO NOT COMPLETE IT A SECOND TIME.
Thank you!
We are very excited to announce that we are beginning a movement to answer your needs for accessible independent housing. As you are aware, we take pride in listening to your concerns and then work diligently for you, our friends who have MS. The awareness of these needs has led the Chapter to partner with other interested organizations and to explore the development of housing alternatives.
To learn more about the needs of people who live with MS everyday, we have developed a survey and we ask for your participation. This will add to our understanding of issues that have been reported in previous surveys that you and others have completed. Your answers will provide us with information about the many needs and desires regarding appropriate housing arrangements for people who are disabled from the effects of MS. Your input is valuable and we look forward to tabulating the results and sharing it with funding resources, government agencies and partnering organizations in moving toward our goal of providing housing opportunities.
Please know that this survey is confidential and at this time we cannot guarantee housing. This is our first step in assessing the housing needs of people who live with MS of all income levels. This information is absolutely crucial in our efforts to influence state and federal funding sources to help create housing.
Certainly, as the Chapter moves forward with any housing plans, we will contact those that have completed this survey. You may access the survey via the following link:
http://www.nationalmssociety.org/MAMHousingSurvey
The deadline for participation is JULY 15, 2011. If you prefer, we can send you a hard copy of the survey to complete and return via US Mail. Please call me to receive the printed version or if you have any questions. Thank you for taking the time to help us to collect the information we need about the housing needs of people with MS.
Sincerely,
Linda R. Guiod, RN, MSSMC
National MS Society, Greater New England Chapter
101 A First Ave.
Waltham, MA 02451
781.693.5124
Thursday, June 16, 2011
MSConnection Summer 2011
Table of Contents — Summer 2011 Issue
MileStones 2011 David Osmond
MileStones Gala 2011 was capped off by a performance from David Osmond, who was diagnosed with MS in 2006.
Features
Accessible Vacation Rentals at Last…
2011 Scholarship Awards
Milestones Awards
News
From The President
Work Toward Your Best Life with MS
Programs
2011 Scholarship Recipients
Invitation to Participate in Housing Needs Survey
Programs
Maine
Massachusetts
New Hampshire
Vermont
Program Highlights
Living with MS
Save-the-Date
Recent Additions to the Dora Lipcon Lending Library
Research
Research Advocate
Resources to Find Clinical Trials
$17.5 Million for 50 New MS Research Projects
Advocacy
Federal Updates
State Updates
Maine
Massachusetts
New Hampshire
Vermont
Volunteers
Passionate People = Productivity
Fundraising
Bike MS Season Starts Strong!
The Golden Circle
Journey of Hope 2011
Accept the Challenge
Link Up for MS
Walk with Us This Fall 2011
30th Annual MS Harborfest
Calendar of Events - see current calendar
Classified Ads - see current listings
MileStones 2011 David Osmond
MileStones Gala 2011 was capped off by a performance from David Osmond, who was diagnosed with MS in 2006.
Features
Accessible Vacation Rentals at Last…
2011 Scholarship Awards
Milestones Awards
News
From The President
Work Toward Your Best Life with MS
Programs
2011 Scholarship Recipients
Invitation to Participate in Housing Needs Survey
Programs
Maine
Massachusetts
New Hampshire
Vermont
Program Highlights
Living with MS
Save-the-Date
Recent Additions to the Dora Lipcon Lending Library
Research
Research Advocate
Resources to Find Clinical Trials
$17.5 Million for 50 New MS Research Projects
Advocacy
Federal Updates
State Updates
Maine
Massachusetts
New Hampshire
Vermont
Volunteers
Passionate People = Productivity
Fundraising
Bike MS Season Starts Strong!
The Golden Circle
Journey of Hope 2011
Accept the Challenge
Link Up for MS
Walk with Us This Fall 2011
30th Annual MS Harborfest
Calendar of Events - see current calendar
Classified Ads - see current listings
Friday, June 3, 2011
Invitation to Participate in Housing Needs Survey
Dear Friend of the National MS Society, Greater New England Chapter:
We are very excited to announce that we are beginning a movement to answer your needs for accessible independent housing. As you are aware, we take pride in listening to your concerns and then work diligently for you, our friends who have MS. The awareness of these needs has led the Chapter to partner with other interested organizations and to explore the development of housing alternatives.
To learn more about the needs of people who live with MS everyday, we have developed a survey and we ask for your participation. This will add to our understanding of issues that have been reported in previous surveys that you and others have completed. Your answers will provide us with information about the many needs and desires regarding appropriate housing arrangements for people who are disabled from the effects of MS. Your input is valuable and we look forward to tabulating the results and sharing it with funding resources, government agencies and partnering organizations in moving toward our goal of providing housing opportunities.
Please know that this survey is confidential and at this time we cannot guarantee housing. This is our first step in assessing the housing needs of people who live with MS of all income levels. This information is absolutely crucial in our efforts to influence state and federal funding sources to help create housing.
Certainly, as the Chapter moves forward with any housing plans, we will contact those that have completed this survey. You may access the survey via the following link:
Housing Survey
The deadline for participation is JULY 15, 2011. If you prefer, we can send you a hard copy of the survey to complete and return via US Mail. Please call me to receive the printed version or if you have any questions. Thank you for taking the time to help us to collect the information we need about the housing needs of people with MS.
Sincerely,
Linda R. Guiod, RN, MSSMC
National MS Society, Greater New England Chapter
101 A First Ave.
Waltham, MA 02451
We are very excited to announce that we are beginning a movement to answer your needs for accessible independent housing. As you are aware, we take pride in listening to your concerns and then work diligently for you, our friends who have MS. The awareness of these needs has led the Chapter to partner with other interested organizations and to explore the development of housing alternatives.
To learn more about the needs of people who live with MS everyday, we have developed a survey and we ask for your participation. This will add to our understanding of issues that have been reported in previous surveys that you and others have completed. Your answers will provide us with information about the many needs and desires regarding appropriate housing arrangements for people who are disabled from the effects of MS. Your input is valuable and we look forward to tabulating the results and sharing it with funding resources, government agencies and partnering organizations in moving toward our goal of providing housing opportunities.
Please know that this survey is confidential and at this time we cannot guarantee housing. This is our first step in assessing the housing needs of people who live with MS of all income levels. This information is absolutely crucial in our efforts to influence state and federal funding sources to help create housing.
Certainly, as the Chapter moves forward with any housing plans, we will contact those that have completed this survey. You may access the survey via the following link:
Housing Survey
The deadline for participation is JULY 15, 2011. If you prefer, we can send you a hard copy of the survey to complete and return via US Mail. Please call me to receive the printed version or if you have any questions. Thank you for taking the time to help us to collect the information we need about the housing needs of people with MS.
Sincerely,
Linda R. Guiod, RN, MSSMC
National MS Society, Greater New England Chapter
101 A First Ave.
Waltham, MA 02451
Wednesday, June 1, 2011
Urge Your Senators to Support MS Research
A few weeks ago, MS activists helped garner support in the U.S. House of Representatives for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP). In just a few short days, MS activists sent over 1,700 emails to Capitol Hill and in response, 50 members of the House signed on to a bipartisan letter circulated by Representatives Michael Burgess, M.D. (TX-26) and Russ Carnahan (MO-3).
This week, MS activists must take quick action again--this time, to urge your Senators to support funding for MS research in the CDMRP. Senators Sheldon Whitehouse (RI) and Mike Johanns (NE) have circulated a bipartisan Dear Colleague letter on the Senate side. The deadline is next Monday, so take action today and urge your Senators to support this vital programmatic request for MS research!
Emerging evidence indicates a potential link between combat service and an increased incidence of MS, with one study theorizing that exposure to neurotoxins could be an environmental trigger for MS. According to a 2003 study in the Annals of Neurology, 5,345 veterans that served in Vietnam and the first Gulf War were diagnosed with MS that was deemed "service-connected." MS research in the CDMRP helps scientists better understand the causes of MS and can help us discover a cure.
This week, MS activists must take quick action again--this time, to urge your Senators to support funding for MS research in the CDMRP. Senators Sheldon Whitehouse (RI) and Mike Johanns (NE) have circulated a bipartisan Dear Colleague letter on the Senate side. The deadline is next Monday, so take action today and urge your Senators to support this vital programmatic request for MS research!
Emerging evidence indicates a potential link between combat service and an increased incidence of MS, with one study theorizing that exposure to neurotoxins could be an environmental trigger for MS. According to a 2003 study in the Annals of Neurology, 5,345 veterans that served in Vietnam and the first Gulf War were diagnosed with MS that was deemed "service-connected." MS research in the CDMRP helps scientists better understand the causes of MS and can help us discover a cure.
Monday, May 16, 2011
Urge Your Members to Support Family Caregivers
Last week, MS activists sent thousands of messages to Capitol Hill urging members of the House to support MS research funding. This week, continue that momentum and urge your Representative to support robust funding for the Lifespan Respite Care Program, another Society priority and program that helps people living with MS and their families.
Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver, becoming some of our nation's 65 million caregivers who provide 80% of long-term care. Family caregivers are vital because they allow people living with MS to remain in the home, avoiding premature and costlier admission to nursing home facilities, but it can be a stressful job.
Respite care is short-term care that helps an individual or family take a break from the daily routine and stress of providing care. Enacted in 2006, the Lifespan Respite Care Program provides competitive grants to states to establish or enhance statewide lifespan respite programs, improve coordination, and improve respite access and quality so that family caregivers have the support they need. States are to serve families regardless of age or special need, making it a critical program for persons living with MS and their families--who are often ineligible for existing respite programs' age requirements.
The Lifespan Respite Care Program offers great promise to people living with MS and their families, but has been woefully underfunded. Representative Jim Langevin (RI-2) is circulating a "Dear Colleague" letter for members of the House to signal their support for robust appropriations for this important program. Contact your Representative today to inform him/her of the importance of the Lifespan Respite Care Program and urge him/her to sign on to Congressman Langevin's letter.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver, becoming some of our nation's 65 million caregivers who provide 80% of long-term care. Family caregivers are vital because they allow people living with MS to remain in the home, avoiding premature and costlier admission to nursing home facilities, but it can be a stressful job.
Respite care is short-term care that helps an individual or family take a break from the daily routine and stress of providing care. Enacted in 2006, the Lifespan Respite Care Program provides competitive grants to states to establish or enhance statewide lifespan respite programs, improve coordination, and improve respite access and quality so that family caregivers have the support they need. States are to serve families regardless of age or special need, making it a critical program for persons living with MS and their families--who are often ineligible for existing respite programs' age requirements.
The Lifespan Respite Care Program offers great promise to people living with MS and their families, but has been woefully underfunded. Representative Jim Langevin (RI-2) is circulating a "Dear Colleague" letter for members of the House to signal their support for robust appropriations for this important program. Contact your Representative today to inform him/her of the importance of the Lifespan Respite Care Program and urge him/her to sign on to Congressman Langevin's letter.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Wednesday, May 11, 2011
Your Rights as a Job Seeker or Employee with a Disability Teleconference
JOIN THE MOVEMENT
The NYC – Southern New York Chapter of the National MS Society is pleased to host Attorney Debra Wolf on Friday, May 13th from 2:00 – 4:00 pm. Ms. Wolf will be discussing your rights as job seekers or employees with a disability.
Attorney Debra Wolf will address questions such as:
What can an employer ask you on a job interview regarding your MS?
How and when to ask for an accommodation?
What are the laws regarding pre-employment medical testing
What constitutes discrimination and how to make a discrimination claim
This program is being offered to chapters in the region via teleconference. Please join us!
To register, please call:
NYC – Southern NY Chapter of the National MS Society
Barbara McKeon, MA, CRC, LMHC
212-453-3218
The NYC – Southern New York Chapter of the National MS Society is pleased to host Attorney Debra Wolf on Friday, May 13th from 2:00 – 4:00 pm. Ms. Wolf will be discussing your rights as job seekers or employees with a disability.
Attorney Debra Wolf will address questions such as:
What can an employer ask you on a job interview regarding your MS?
How and when to ask for an accommodation?
What are the laws regarding pre-employment medical testing
What constitutes discrimination and how to make a discrimination claim
This program is being offered to chapters in the region via teleconference. Please join us!
To register, please call:
NYC – Southern NY Chapter of the National MS Society
Barbara McKeon, MA, CRC, LMHC
212-453-3218
Tuesday, May 10, 2011
Help Urgently Needed to Maintain MS Research Funding
Because of the hard work of MS activists across the country, approximately $17 million has been allocated to MS research under the Congressionally Directed Medical Research Programs (CDMRP) over the past four years. The CDMRP is a Department of Defense (DoD) program that is funded annually via the Defense Appropriations Act. It is important that you act now to ensure this funding stream for MS research is maintained!
We need your help to secure funding for MS research under the CDMRP. Ask your Representative to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure. The large number of grant proposals submitted each year to the DoD for MS projects indicate that there is a clear need for more funding for MS research.
Because the timeline for requests has been condensed this year, Members of the House must submit their requests for Department of Defense appropriations by this Friday. Click here to contact your Representative today and ask them to show their support for people living with MS by signing onto a bipartisan Dear Colleague letter circulated by Representatives Burgess (TX-26) and Carnahan (MO-3), in addition to including the MS program in the CDMRP in their DoD appropriations request.
A similar letter will be circulated shortly in the Senate, so watch out for another legislative alert and opportunity to take action and support MS research!
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
We need your help to secure funding for MS research under the CDMRP. Ask your Representative to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure. The large number of grant proposals submitted each year to the DoD for MS projects indicate that there is a clear need for more funding for MS research.
Because the timeline for requests has been condensed this year, Members of the House must submit their requests for Department of Defense appropriations by this Friday. Click here to contact your Representative today and ask them to show their support for people living with MS by signing onto a bipartisan Dear Colleague letter circulated by Representatives Burgess (TX-26) and Carnahan (MO-3), in addition to including the MS program in the CDMRP in their DoD appropriations request.
A similar letter will be circulated shortly in the Senate, so watch out for another legislative alert and opportunity to take action and support MS research!
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Friday, May 6, 2011
Federal Focus - May 2011
Contact Your Members of Congress to Maintain Important Funding for MS Research and Respite Services
As Congress returned from recess last week, the federal government spending debates have begun again (scroll down to see a synopsis). After long deliberations over the Fiscal Year (FY) 2011 budget, Congress is slated to start the process over again for FY2012. As with years past, the National MS Society will be advocating for a number of initiatives to help accelerate research and treatments, and support families affected by MS. Click here to email your Members of Congress and ask them to request funding for MS priority issues!
Like FY2011, the FY 2012 appropriations process could be subject to lengthy discussions over the best approach to addressing fiscal concerns, while continuing to support important areas within the government. Just last month, the House debated and passed a FY2012 budget plan, largely along party lines, that would cut spending by $5.8 trillion over the next ten years according to the House Budget Committee. It fundamentally overhauls the Medicare and Medicaid programs. In response, President Obama released his own long-term budget proposal on April 13, which would cut approximately $4 trillion from the deficit over 12 years. Notably, President Obama’s proposal is a combination of spending cuts and tax increases for higher-income Americans. In addition, a bipartisan group of Senators is working on a proposal which is expected to include some of the recommendations from last year’s Fiscal Commission.
The appropriations season for FY2012 is slated to be considerably condensed due to the extended time allotted this year to pass the FY 2011 budget. Therefore, it is extremely important for you to contact your Members today and remind them to support two of our top appropriations requests: the MS research program in the Congressional Directed Medical Research Programs (CDMRP) and the Lifespan Respite Care Program.
MS activists have been successful in opening a new funding stream for MS research within the CDMRP, receiving $5 million in FY 2009, $4.5 million in FY 2010 and $4.8 million in FY 2011. In order to keep this momentum and research going, ask your Member to include the MS program in the CDMRP in their programmatic requests. Similarly, respite care services are vital to ensuring quality home-based care for people living with MS. The Lifespan Respite Care Act was enacted in 2006, but has been woefully underfunded. Click here to take action today!
Congress Passes FY 2011 Budget; Maintains MS Research and Services
On April 14, Congress passed and later the President signed a full year Continuing Resolution (CR) for the remainder of FY 2011. After many weeks of negotiations, the Senate, House and President agreed to a budget that will cut $38 billion dollars from the federal budget. This bill will fund the federal government agencies and programs for the remainder of the fiscal year, through the end of September, 2011. Below is a summary of the final FY2011 budget for agencies and programs important to people living with MS.
FUNDING HIGHLIGHTS
MS Research in the Congressionally Directed Medical Research Program: The MS program in the CDMRP received $4.8 million in FY 2011, a modest increase of $300,000 over FY 2010. This brings the total allotted to MS in the CDMRP to more than $17 million over the past four years.
Lifespan Respite Care Act: The Lifespan Respite program received $2.5 million dollars, the same amount that the program received in FY2010.
National Institutes of Health (NIH): The bill provides $30.7 billion for NIH, a $260 million reduction (0.8 percent) below the FY2010 level.
Food & Drug Administration (FDA): The FDA will see a $107 million increase over FY 2010 funding levels; however, those dollars are largely allocated to food safety programs and not drug approval.
The Society is appreciative of the tremendous work MS activists did in achieving these budget victories, given the continued difficult economic climate that the country faces.
Court of Appeals Ruling Protects Stem Cell Research
On Friday, April 29, the U.S. Court of Appeals for the District of Columbia in a 2-1 decision lifted an injunction imposed last year by a district court judge that blocked federal funding of human embryonic stem cell research. The district court’s injunction was subsequently stayed, allowing research already being conducted at the National Institutes of Health (NIH) to continue while the appeals process unfolded. Last week’s Court of Appeals decision vacates the original injunction and continues to protect federal funding for stem cell research.
The National MS Society has made a commitment to pursue promising avenues that will lead to solutions that stop disease progression, restore function, and ultimately prevent future generations from ever receiving an MS diagnosis. This commitment is reflected in our decision to support the conduct of scientifically meritorious medical research, including research using human cells, in accordance with federal, state and local laws, and with adherence to the strictest ethical and procedural guidelines. This decision was not reached without intense scrutiny and discussion among volunteers, people living with MS, ethicists, researchers and scientists, and MS neurologists.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
As Congress returned from recess last week, the federal government spending debates have begun again (scroll down to see a synopsis). After long deliberations over the Fiscal Year (FY) 2011 budget, Congress is slated to start the process over again for FY2012. As with years past, the National MS Society will be advocating for a number of initiatives to help accelerate research and treatments, and support families affected by MS. Click here to email your Members of Congress and ask them to request funding for MS priority issues!
Like FY2011, the FY 2012 appropriations process could be subject to lengthy discussions over the best approach to addressing fiscal concerns, while continuing to support important areas within the government. Just last month, the House debated and passed a FY2012 budget plan, largely along party lines, that would cut spending by $5.8 trillion over the next ten years according to the House Budget Committee. It fundamentally overhauls the Medicare and Medicaid programs. In response, President Obama released his own long-term budget proposal on April 13, which would cut approximately $4 trillion from the deficit over 12 years. Notably, President Obama’s proposal is a combination of spending cuts and tax increases for higher-income Americans. In addition, a bipartisan group of Senators is working on a proposal which is expected to include some of the recommendations from last year’s Fiscal Commission.
The appropriations season for FY2012 is slated to be considerably condensed due to the extended time allotted this year to pass the FY 2011 budget. Therefore, it is extremely important for you to contact your Members today and remind them to support two of our top appropriations requests: the MS research program in the Congressional Directed Medical Research Programs (CDMRP) and the Lifespan Respite Care Program.
MS activists have been successful in opening a new funding stream for MS research within the CDMRP, receiving $5 million in FY 2009, $4.5 million in FY 2010 and $4.8 million in FY 2011. In order to keep this momentum and research going, ask your Member to include the MS program in the CDMRP in their programmatic requests. Similarly, respite care services are vital to ensuring quality home-based care for people living with MS. The Lifespan Respite Care Act was enacted in 2006, but has been woefully underfunded. Click here to take action today!
Congress Passes FY 2011 Budget; Maintains MS Research and Services
On April 14, Congress passed and later the President signed a full year Continuing Resolution (CR) for the remainder of FY 2011. After many weeks of negotiations, the Senate, House and President agreed to a budget that will cut $38 billion dollars from the federal budget. This bill will fund the federal government agencies and programs for the remainder of the fiscal year, through the end of September, 2011. Below is a summary of the final FY2011 budget for agencies and programs important to people living with MS.
FUNDING HIGHLIGHTS
MS Research in the Congressionally Directed Medical Research Program: The MS program in the CDMRP received $4.8 million in FY 2011, a modest increase of $300,000 over FY 2010. This brings the total allotted to MS in the CDMRP to more than $17 million over the past four years.
Lifespan Respite Care Act: The Lifespan Respite program received $2.5 million dollars, the same amount that the program received in FY2010.
National Institutes of Health (NIH): The bill provides $30.7 billion for NIH, a $260 million reduction (0.8 percent) below the FY2010 level.
Food & Drug Administration (FDA): The FDA will see a $107 million increase over FY 2010 funding levels; however, those dollars are largely allocated to food safety programs and not drug approval.
The Society is appreciative of the tremendous work MS activists did in achieving these budget victories, given the continued difficult economic climate that the country faces.
Court of Appeals Ruling Protects Stem Cell Research
On Friday, April 29, the U.S. Court of Appeals for the District of Columbia in a 2-1 decision lifted an injunction imposed last year by a district court judge that blocked federal funding of human embryonic stem cell research. The district court’s injunction was subsequently stayed, allowing research already being conducted at the National Institutes of Health (NIH) to continue while the appeals process unfolded. Last week’s Court of Appeals decision vacates the original injunction and continues to protect federal funding for stem cell research.
The National MS Society has made a commitment to pursue promising avenues that will lead to solutions that stop disease progression, restore function, and ultimately prevent future generations from ever receiving an MS diagnosis. This commitment is reflected in our decision to support the conduct of scientifically meritorious medical research, including research using human cells, in accordance with federal, state and local laws, and with adherence to the strictest ethical and procedural guidelines. This decision was not reached without intense scrutiny and discussion among volunteers, people living with MS, ethicists, researchers and scientists, and MS neurologists.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Wednesday, May 4, 2011
Spring Special at the Snowflake Inn, Jackson NH for People with MS & their special guest!
During the month of May, the Snowflake Inn in Jackson, NH is offering an exceptional opportunity for people with MS and their spouse or partner. Enjoy a relaxing getaway in the scenic White Mountains with your special someone.
Reservations any Sunday through Thursday from May 1 to May 26 are only $99 per night.
No minimum stay. Enjoy all the amenities like the indoor spa, on-site Massage and romantic rooms with fireplace & Jacuzzi tub. Continental breakfast provided.
For more information and to make your reservation, contact the Snowflake Inn toll-free (888) 383-1020 or visit The Snowflake Inn.
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
Reservations any Sunday through Thursday from May 1 to May 26 are only $99 per night.
No minimum stay. Enjoy all the amenities like the indoor spa, on-site Massage and romantic rooms with fireplace & Jacuzzi tub. Continental breakfast provided.
For more information and to make your reservation, contact the Snowflake Inn toll-free (888) 383-1020 or visit The Snowflake Inn.
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
Tuesday, May 3, 2011
Conventional medicine finally admits MS caused by vitamin D deficiency Learn more: http://www.naturalnews.com/032244_multiple_sclerosis_vitamin_D_deficiency.
Friday, April 29, 2011 by: M.K. Tyler
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(NaturalNews) Is it true that those who suffer from Multiple sclerosis (MS) just need a little sun? Researchers at the University of Oxford seem to think so. In 2006, a study by the Journal of the American Medical Association suggested higher levels of vitamin D might decrease overall risk of developing MS. Now researchers at the University of Oxford are backing that study with further evidence while also suggesting a link between lack of sunlight and how the body responds when faced with an infection. The research concludes that MS is caused by several factors working in combination but clearly correlates to a lack of vitamin D.
Is it really as simple as soaking up some rays?
While the phenomenon of vitamin D deficiency is seen all over the world, countries in the northern hemisphere have been linked to significantly higher rates of MS. Scotland, for example, has one of the largest populations of MS sufferers, while the disease is "virtually unknown" in Africa. Even in sunny areas of the globe, it's not uncommon for people to become vitamin D deficient during the winter, as the sun's rays aren't often high enough to penetrate atmospheric layers.
The research put forth by the University of Oxford suggests that, while those who already have MS may not benefit exponentially simply by increasing levels of vitamin D, getting more sun could be an effective preventative measure against developing the disease and managing symptoms.
More importantly, MS sufferers may be able to boost immunity to other conditions with an increase in vitamin D. A recent study by Anticancer Research affirms that typical adults need much more than the daily dosage recommended by the U.S. Government. According to that research, 4,000-8,000 IUs of vitamin D every day could not only help prevent MS but also several types of cancer and Type 1 diabetes.
The health care industry, of course, won't promote a natural and safe preventative measure for degenerative diseases. Instead, people are warned about the dangers of UV exposure and the risks of vitamin toxicity. With vitamin D deficiency afflicting 90% of the U.S. population, however, it may be time to get a tan. Here are some interesting facts about the relationship between vitamin D and health:
1. It's free. Five to thirty minutes of sunlight a couple of times a week is usually sufficient for helping the body create enough vitamin D
2. Getting enough vitamin D from food is virtually impossible
3. Sunscreens may block the body's ability to generate vitamin D
4. Vitamin D is essential for the absorption of calcium in the body
5. Those who live further from the equator generally require longer periods of sun exposure to generate enough vitamin D
6. A lack of vitamin D can affect bone strength. One theory suggests that women who are deficient in vitamin D can suffer from contracting pelvises, which can result in the death of babies during labor
7. Vitamin D deficiency cannot be reversed quickly. It takes months for the body to increase and regulate vitamin D levels. This is why short periods of sun exposure are not only safe but also necessary for the synthesis of this important substance
For those with MS, increased sun exposure may be an easy and safe preventative measure against further cognitive and physical degeneration. As a direct threat to the medical establishment, however, it remains to be seen whether further government warnings and regulations about vitamin D will eventually ban people from sun bathing.
Sources for this article include
http://www.bbc.co.uk/news/health-13...
http://health.usnews.com/usnews/hea...
http://www.guardian.co.uk/science/2...
Articles Related to This Article:
Learn more: http://www.naturalnews.com/032244_multiple_sclerosis_vitamin_D_deficiency.html#ixzz1LJhaXLsp
3035Share
Share/Save/Bookmark
Get daily news updates from the Health Ranger
Your email privacy is 100% protected.
(NaturalNews) Is it true that those who suffer from Multiple sclerosis (MS) just need a little sun? Researchers at the University of Oxford seem to think so. In 2006, a study by the Journal of the American Medical Association suggested higher levels of vitamin D might decrease overall risk of developing MS. Now researchers at the University of Oxford are backing that study with further evidence while also suggesting a link between lack of sunlight and how the body responds when faced with an infection. The research concludes that MS is caused by several factors working in combination but clearly correlates to a lack of vitamin D.
Is it really as simple as soaking up some rays?
While the phenomenon of vitamin D deficiency is seen all over the world, countries in the northern hemisphere have been linked to significantly higher rates of MS. Scotland, for example, has one of the largest populations of MS sufferers, while the disease is "virtually unknown" in Africa. Even in sunny areas of the globe, it's not uncommon for people to become vitamin D deficient during the winter, as the sun's rays aren't often high enough to penetrate atmospheric layers.
The research put forth by the University of Oxford suggests that, while those who already have MS may not benefit exponentially simply by increasing levels of vitamin D, getting more sun could be an effective preventative measure against developing the disease and managing symptoms.
More importantly, MS sufferers may be able to boost immunity to other conditions with an increase in vitamin D. A recent study by Anticancer Research affirms that typical adults need much more than the daily dosage recommended by the U.S. Government. According to that research, 4,000-8,000 IUs of vitamin D every day could not only help prevent MS but also several types of cancer and Type 1 diabetes.
The health care industry, of course, won't promote a natural and safe preventative measure for degenerative diseases. Instead, people are warned about the dangers of UV exposure and the risks of vitamin toxicity. With vitamin D deficiency afflicting 90% of the U.S. population, however, it may be time to get a tan. Here are some interesting facts about the relationship between vitamin D and health:
1. It's free. Five to thirty minutes of sunlight a couple of times a week is usually sufficient for helping the body create enough vitamin D
2. Getting enough vitamin D from food is virtually impossible
3. Sunscreens may block the body's ability to generate vitamin D
4. Vitamin D is essential for the absorption of calcium in the body
5. Those who live further from the equator generally require longer periods of sun exposure to generate enough vitamin D
6. A lack of vitamin D can affect bone strength. One theory suggests that women who are deficient in vitamin D can suffer from contracting pelvises, which can result in the death of babies during labor
7. Vitamin D deficiency cannot be reversed quickly. It takes months for the body to increase and regulate vitamin D levels. This is why short periods of sun exposure are not only safe but also necessary for the synthesis of this important substance
For those with MS, increased sun exposure may be an easy and safe preventative measure against further cognitive and physical degeneration. As a direct threat to the medical establishment, however, it remains to be seen whether further government warnings and regulations about vitamin D will eventually ban people from sun bathing.
Sources for this article include
http://www.bbc.co.uk/news/health-13...
http://health.usnews.com/usnews/hea...
http://www.guardian.co.uk/science/2...
Articles Related to This Article:
Learn more: http://www.naturalnews.com/032244_multiple_sclerosis_vitamin_D_deficiency.html#ixzz1LJhaXLsp
Friday, April 29, 2011
National Multiple Sclerosis Society, Greater New England Chapter MS Vacation Week “A week away, a world of difference!”
Come to our five day getaway for people moderately to severely affected by MS, combining recreational, educational, and social opportunities at Easter Seals Camp Hemlocks.
Camp Hemlocks is specifically designed for accessibility, providing a unique, independent, and supportive environment, located on 166 acres of unspoiled forest and a 22 acre lake for boating and fishing. Other activities include swimming in an accessible indoor pool, talent show, arts & crafts, and yoga. An MS Certified Nurse is on site for the week. Space is limited. Apply early!
Date: Sunday, June 12 – Friday, June 17, 2011
Where: Easter Seals Camp Hemlocks Recreation Center, Hebron, CT
Cost: $395 per person (includes lodging, meals, and activities)
To Apply: Contact Martha Maynard at 1-800-344-4867, option 2 or martha.maynard@nmss.org
Deadline: Completed Application by May 16, 2011
Transportation: You must provide your own transportation to and from Camp Hemlocks.
Personal Care: If more than minimal assistance is required, you must be accompanied by a PCA (personal care assistant) or caregiver. (Their lodging and meal cost is provided by the NMSS).
Financial Assistance: Available to those who demonstrate need (must be requested when applying)
Camp Hemlocks is specifically designed for accessibility, providing a unique, independent, and supportive environment, located on 166 acres of unspoiled forest and a 22 acre lake for boating and fishing. Other activities include swimming in an accessible indoor pool, talent show, arts & crafts, and yoga. An MS Certified Nurse is on site for the week. Space is limited. Apply early!
Date: Sunday, June 12 – Friday, June 17, 2011
Where: Easter Seals Camp Hemlocks Recreation Center, Hebron, CT
Cost: $395 per person (includes lodging, meals, and activities)
To Apply: Contact Martha Maynard at 1-800-344-4867, option 2 or martha.maynard@nmss.org
Deadline: Completed Application by May 16, 2011
Transportation: You must provide your own transportation to and from Camp Hemlocks.
Personal Care: If more than minimal assistance is required, you must be accompanied by a PCA (personal care assistant) or caregiver. (Their lodging and meal cost is provided by the NMSS).
Financial Assistance: Available to those who demonstrate need (must be requested when applying)
Friday, April 15, 2011
Reminder: National MS Society, Greater New England Chapter: Upcoming Teleconference
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National MS Society, Greater New England Chapter
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REMINDER: The National MS Society, Greater New England Chapter, presents upcoming teleconference!
CCSVI in MS: An Update with Costantine Balashov, MD
The current facts about this controversial research will be discussed.
Date: Tuesday, May 3, 2011
Time: 7:00 - 8:00 pm
Register before April 26, 2011
Visit Teleconference Series: National MS Society to register for this program online or call 1-800-344-4867. Due to the high number of participants we may not be able to have a live Q&A. If you would like to ask a question, please submit it at the time of registration.
Facebook Become a fan of the Greater New England Chapter on Facebook
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
National MS Society, Greater New England Chapter
to me
show details 1:50 PM (48 minutes ago)
Images are not displayed.
Display images below - Always display images from heidi.eastman@nmss.org
Email not displaying correctly? View it in your browser.
JOIN THE MOVEMENT
REMINDER: The National MS Society, Greater New England Chapter, presents upcoming teleconference!
CCSVI in MS: An Update with Costantine Balashov, MD
The current facts about this controversial research will be discussed.
Date: Tuesday, May 3, 2011
Time: 7:00 - 8:00 pm
Register before April 26, 2011
Visit Teleconference Series: National MS Society to register for this program online or call 1-800-344-4867. Due to the high number of participants we may not be able to have a live Q&A. If you would like to ask a question, please submit it at the time of registration.
Facebook Become a fan of the Greater New England Chapter on Facebook
National Multiple Sclerosis Society, Greater New England Chapter
101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115
tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org
Monday, April 4, 2011
SOCIAL SECURITY News Release Social Security Holds Compassionate Allowances Hearing on Autoimmune Diseases
Michael J. Astrue, Commissioner of Social Security, today hosted the agency’s seventh public hearing on Compassionate Allowances. Commissioner Astrue joined Robert H. Carter, Deputy Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, and other Social Security officials in hearing testimony from some of the nation’s leading experts on autoimmune diseases about the possible methods of identifying and implementing Compassionate Allowances for adults and children with autoimmune diseases.
“Over 20 million Americans suffer from autoimmune conditions, which particularly affect women and children,” Commissioner Astrue said. “The social and financial burdens imposed by these chronic, debilitating diseases can be devastating for individuals and their families. With this hearing, we are searching for objective medical evidence and decision rules that we can use to expedite cases for those with the most severe conditions and quickly provide them with some measure of financial security.”
Social Security implemented Compassionate Allowances in October 2008 to expedite the processing of disability claims for applicants with medical conditions so severe that their conditions by definition meet Social Security's standards. Currently, 88 specific diseases and conditions qualify as a Compassionate Allowance. To learn more and to view a web cast of this hearing, go to www.socialsecurity.gov/compassionateallowances.
“Last year, the Compassionate Allowances initiative, along with our Quick Disability Determination process, allowed us to quickly approve over 100,000 disability applications for the most severely disabled Americans,” said Commissioner Astrue. “This year we expect to increase the number of fast-tracked cases to about 150,000. We also plan to expand our list of Compassionate Allowance conditions later this year, bringing it to about 100 conditions.”
# # #
SSA Press Office 440 Altmeyer Building 6401 Security Blvd. Baltimore, MD 21235
410-965-8904 FAX 410-966-9973
“Over 20 million Americans suffer from autoimmune conditions, which particularly affect women and children,” Commissioner Astrue said. “The social and financial burdens imposed by these chronic, debilitating diseases can be devastating for individuals and their families. With this hearing, we are searching for objective medical evidence and decision rules that we can use to expedite cases for those with the most severe conditions and quickly provide them with some measure of financial security.”
Social Security implemented Compassionate Allowances in October 2008 to expedite the processing of disability claims for applicants with medical conditions so severe that their conditions by definition meet Social Security's standards. Currently, 88 specific diseases and conditions qualify as a Compassionate Allowance. To learn more and to view a web cast of this hearing, go to www.socialsecurity.gov/compassionateallowances.
“Last year, the Compassionate Allowances initiative, along with our Quick Disability Determination process, allowed us to quickly approve over 100,000 disability applications for the most severely disabled Americans,” said Commissioner Astrue. “This year we expect to increase the number of fast-tracked cases to about 150,000. We also plan to expand our list of Compassionate Allowance conditions later this year, bringing it to about 100 conditions.”
# # #
SSA Press Office 440 Altmeyer Building 6401 Security Blvd. Baltimore, MD 21235
410-965-8904 FAX 410-966-9973
Federal Focus - April 2011 Take Action! Protect Priorities for People with MS in the Federal Budget
Congress continues to work diligently to complete action on the Fiscal Year (FY) 2011 budget. Twice this year, the 112th Congress has passed short-term continuing resolutions that keep the federal governments and its programs operating. The first short-term extension was signed by the President on March 2 and kept the federal government operating through March 18 and the second short-term extension enacted in mid-March maintains operations through this Friday, April 8. As Congress continues to debate the budget, ask your Members of Congress to maintain vital programs for people living with MS.
In the continued difficult budget climate, much of the debate has centered around high level funding figures, whether large cuts should be made, and where they should occur. With both sides trying to complete work rather than enact yet another short-term solution or force a government shutdown, it appears from recent conversations that the negotiating parties are trying to determine the appropriate amount of funding cuts. The House of Representatives earlier passed a measure (H.R. 1) that would have cut $61 billion from current spending levels.
As federal spending for FY 2011 is finalized, it is vital that the MS community urge support of federal departments and programs that seek to improve the lives of people living with MS. Click here to email your members of Congress today and urge them to:
provide at least $6 million for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP);
maintain and not cut funding for the National Institutes of Health (NIH); and
provide at least $7 million for the Lifespan Respite Care Program.
MS Activists Visit Capitol Hill During PPC
From March 7 – 9, 2011, approximately 350 MS activists from all over the country convened in Washington, DC for the National MS Society’s 20th annual Public Policy Conference (PPC). MS activists, all donning “MS orange” and including people living with MS, family members, caregivers and other Society staff and volunteers visited over 350 offices on Capitol Hill to raise awareness about MS and advocate for improved access to neurological care (S. 597), MS research funding in the Congressionally Directed Medical Research Programs (CDMRP), and the Adult Day Achievement Center Enhancement Act (H.R. 883/S. 495).
Direct results from Hill Day and MS activists’ work have already been seen. Within a week, at least six members of Congress have joined the Congressional MS Caucus and ten Representatives have joined as co-sponsors of the Adult Day Achievement Center Enhancement Act (H.R. 883). Progress from the PPC will continue to be seen, as the Society’s advocacy efforts are truly year-round.
During the PPC, the Society awarded 2010 Representative of the Year awards to Representative William “Mac” Thornberry (TX-13) and Representative James R. Langevin (RI-2), as well as the 2010 Senator of the Year award to Senator Robert P. Casey, Jr. (PA), and a Congressional Staffer of the Year award to James “J.P.” Paluskiewicz, Legislative Director for Representative Michael C. Burgess, M.D. (TX-26). Visit the MS Activist Blog to view pictures from the conference.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
In the continued difficult budget climate, much of the debate has centered around high level funding figures, whether large cuts should be made, and where they should occur. With both sides trying to complete work rather than enact yet another short-term solution or force a government shutdown, it appears from recent conversations that the negotiating parties are trying to determine the appropriate amount of funding cuts. The House of Representatives earlier passed a measure (H.R. 1) that would have cut $61 billion from current spending levels.
As federal spending for FY 2011 is finalized, it is vital that the MS community urge support of federal departments and programs that seek to improve the lives of people living with MS. Click here to email your members of Congress today and urge them to:
provide at least $6 million for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP);
maintain and not cut funding for the National Institutes of Health (NIH); and
provide at least $7 million for the Lifespan Respite Care Program.
MS Activists Visit Capitol Hill During PPC
From March 7 – 9, 2011, approximately 350 MS activists from all over the country convened in Washington, DC for the National MS Society’s 20th annual Public Policy Conference (PPC). MS activists, all donning “MS orange” and including people living with MS, family members, caregivers and other Society staff and volunteers visited over 350 offices on Capitol Hill to raise awareness about MS and advocate for improved access to neurological care (S. 597), MS research funding in the Congressionally Directed Medical Research Programs (CDMRP), and the Adult Day Achievement Center Enhancement Act (H.R. 883/S. 495).
Direct results from Hill Day and MS activists’ work have already been seen. Within a week, at least six members of Congress have joined the Congressional MS Caucus and ten Representatives have joined as co-sponsors of the Adult Day Achievement Center Enhancement Act (H.R. 883). Progress from the PPC will continue to be seen, as the Society’s advocacy efforts are truly year-round.
During the PPC, the Society awarded 2010 Representative of the Year awards to Representative William “Mac” Thornberry (TX-13) and Representative James R. Langevin (RI-2), as well as the 2010 Senator of the Year award to Senator Robert P. Casey, Jr. (PA), and a Congressional Staffer of the Year award to James “J.P.” Paluskiewicz, Legislative Director for Representative Michael C. Burgess, M.D. (TX-26). Visit the MS Activist Blog to view pictures from the conference.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
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About Me
- Steve
- North Grafton, Massachusetts, United States
- Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.