Topics that will be covered
• The hot research issues of Vitamin D and CCSVI
• Progressive MS
• A wide variety of employment issues
• Reproductive issues
Sign up for one or as many as you would like.
Research & General Information Teleconferences
Vitamin D with Sylvia Christakos, PhD, UMDNJ
You’ve heard the buzz – what is it all about? Join Sylvia Christakos, PhD, of the University of Medicine and Dentistry, New Jersey, professor and leading researcher to discuss the real facts about Vitamin D. Register now!
Thursday, December 16, 2010 7:00 - 8:00 pm - Register by Dec. 11, 2010
Reproductive Issues in MS with June Halper, APN-C, MSCN, FAAN
Find out answers to questions you have regarding the issues specific to planning and raising a family when you have MS.
Wednesday, February 16, 2011 7:00 - 8:00 pm - Register before Feb. 11, 2011
CCSVI in MS: An Update with Konstantin Balashov, MD, PhD
The current facts about this controversial research will be discussed.
Tuesday, May 3, 2011 7:00 - 8:00 pm - Register before April 26, 2011
Progressive MS Teleconferences
Overview of Progressive MS with Dorothy Northrop, MSW, ACSW
Increase knowledge of progressive MS symptoms, symptom management, emotional issues, coping strategies, family issues and resources for when family help is not enough.
Tuesday, January 25, 2011 6:30 – 7:30 pm - Register before January 19, 2011
The "Ex-Rated" Guide to Living with MS with Shelley Peterman Schwarz
Living and living well are two different things. Is MS limiting your life? Learn, from one who has been there—who has lived with severe disability due to primary progressive MS for over 30 years—how giving in to life’s challenges does not have to mean giving up. Learn how you can make creative compromises to make life more manageable and more enjoyable. Using words like “explore”, “execute” and “expand” has never been so sexy!
Wednesday, February 1, 2011 6:30 – 7:30 pm - Register before January 26, 2011
Employment Issues Teleconferences
How to Apply for Jobs in the Federal Government: Webinar
Participants will learn about special hiring programs for people living with disabilities and how to navigate the federal system from a regional recruitment coordinator with the U.S. Department of Labor. This program will include an online component if you have access to the Internet, but it is not required.
Thursday, January 27, 2011 7:00 – 8:30 pm Register before January 21, 2011
Social Security Disability Eligibility and Application Process
Participants will learn what it takes to be approved for Social Security disability benefits from a Social Security attorney.
Thursday, February 10, 2011 7:00 – 8:00 pm - Register before February 4, 2011
Social Security Disability and Returning to Work
Participants will learn about the impact work might have on their disability benefits from a Community Work Incentive Coordinator.
Thursday, February 17, 2011 7:00 – 8:00 pm - Register before Feb. 11, 2011
Jobs with Flexibility
Participants will learn about part-time and non-traditional job opportunities that allow for a flexible schedule.
Thursday, February 24, 2011 7:00 – 8:00 pm - Register before Feb. 18, 2011
Practical Tips for Managing Challenging MS Symptoms on the Job
MS specialists will share practical ways to manage fatigue and
cognitive dysfunction, two common and difficult symptoms that
people living with MS experience at work.
Wednesday, March 16, 2011 7:00 – 8:00 pm - Register before March 11, 2011
Wellness and Work
Positive wellness behaviors can minimize the impact of fatigue and cognitive symptoms and lead to greater productivity on the job. Join a personal trainer and nutritionist for tips on physical exercise, healthy eating, stress management and good sleep habits.
Wednesday, March 30, 2011 7:00 – 8:00 pm - Register before March 25, 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.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Friday, December 10, 2010
Move to Labels More actions 1 of 863 Older › MSConnection Winter 2010National MS Society, Greater New England Chapter
Table of Contents — Winter 2010 Issue
Eli Lipcon & Bob Shapiro
Outgoing Board Chairman Eli Lipcon passes the gavel to incoming Chairman Robert Shapiro
Features
* Waterman Research Lecturers Cover Timely Topics
* Annual Meeting Unites Four States
News
* From The President
* Gilenya Is Approved
Newly Diagnosed
* Living Well With MS
Programs
* Relationship Matters
* Café con Leche
* Teleconference Schedule
* Sweet Socials
* Program Highlights
Living with MS
* Seeking Self-Help Group Leaders
* Apply Now for College Scholarships
* Questions About Health Insurance Changes?
Research
* Research Advocate
* Why Does MS Research Cost So Much?
* MS Researchers Share Progress at Annual ECTRIMS Conference
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
* Prescription Parity
* MS Registry
Volunteers
* Retirement Planning with a Chronic Illness
Fundraising
* Walk with Us in 2011
* Ride with Us in 2011
* Journey of Hope 2011
* Accept the Challenge 2011
* 2010 Event Re-caps
Calendar of Events - see current calendar
Classified Ads - see current listings
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
Unsubscribe
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Forward to a Friend
Privacy Policy
Powered
Eli Lipcon & Bob Shapiro
Outgoing Board Chairman Eli Lipcon passes the gavel to incoming Chairman Robert Shapiro
Features
* Waterman Research Lecturers Cover Timely Topics
* Annual Meeting Unites Four States
News
* From The President
* Gilenya Is Approved
Newly Diagnosed
* Living Well With MS
Programs
* Relationship Matters
* Café con Leche
* Teleconference Schedule
* Sweet Socials
* Program Highlights
Living with MS
* Seeking Self-Help Group Leaders
* Apply Now for College Scholarships
* Questions About Health Insurance Changes?
Research
* Research Advocate
* Why Does MS Research Cost So Much?
* MS Researchers Share Progress at Annual ECTRIMS Conference
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
* Prescription Parity
* MS Registry
Volunteers
* Retirement Planning with a Chronic Illness
Fundraising
* Walk with Us in 2011
* Ride with Us in 2011
* Journey of Hope 2011
* Accept the Challenge 2011
* 2010 Event Re-caps
Calendar of Events - see current calendar
Classified Ads - see current listings
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
Unsubscribe
Email Preferences
Forward to a Friend
Privacy Policy
Powered
Federal Focus - December 2010
Medicare Reimbursement and Therapy Caps Temporarily Addressed
This week, Congress passed the Medicare and Medicaid Extenders Act of 2010. This bill will temporarily preserve Medicare reimbursement rates for physicians and protect Medicare beneficiaries’ access to Medicare physical therapy, occupational therapy, and speech language pathology for the next several months.
Currently, the Medicare program covers an estimated 47 million people, including 8 million people with disabilities who are under age 65. Nearly one-quarter of those living with MS rely on Medicare as their primary type of insurance. The sustainable growth rate (SGR) is a major component of Medicare’s current payment formula that determines annual updates and has the potential to drastically cut Medicare physician reimbursement rates, threatening access to services. Because of the negative real world impact, Congress has deferred the cuts several times—the last time delaying the cuts through December 31, 2010. The recently passed Medicare and Medicaid Extenders Act blocks a scheduled 25 percent cut that would have taken effect on January 1, 2011 and protects reimbursement through December 31, 2011.
The legislation also extends through December 31, 2011 the exceptions process for outpatient Medicare therapy caps. An arbitrary limit, the Medicare therapy cap places a combined limit of $1,860 on physical therapy and speech language pathology services and a separate $1,860 limit for occupational therapy services. In 2006, Congress authorized the Centers for Medicare and Medicaid Services (CMS) to create an exceptions process, whereby individuals can continue to access medically necessary physical therapy, occupational therapy, and speech language pathology services above cap levels as long as services met specified diagnostic and clinical criteria. The exceptions process has been extended several times and the Medicare and Medicaid Extenders Act of 2010 will continue to protect access to therapy services through December 31, 2011.
111th Congress Winds Down Without a Senate Vote on MS Registry Bill
With the lame duck session of Congress coming to an expected close by the end of next week, the Society is disappointed that the Senate has not taken up and voted on the National Neurological Disease Surveillance System Act (H.R.1362) to date. With limited time and over 400 House-passed bills awaiting a Senate vote, it seems there is little opportunity for our bill to make it to the Senate floor this session of Congress. While the prospects seem slim, it is not for a lack of passion or effort on behalf of our activists! The activists involved in this effort have been relentless in trying to move this forward and see this enacted and we are so thankful for all of their help and inspiration!
Federal Appropriations Being Determined for Fiscal Year 2011
The federal government has been operating under a Continuing Resolution (CR) that largely maintains current funding for federal departments and programs at fiscal year (FY) 2010 levels. This week, the House approved a longer term continuing resolution that will continue to freeze FY 2011 spending for the remainder of the fiscal year at FY 2010 levels.
Senate Democrats plan to try to substitute an omnibus bill that includes text from unfinished appropriations measures that alters some funding levels. Approved but unfinished appropriations measures have included significant increases for two programs important to people living with MS--MS research in the Congressionally Directed Medical Research Programs (CDMRP) and the Lifespan Respite Care Program. The Society recently sent a letter requesting that Congress maintain these increases for MS research in the CDMRP and the Lifespan Respite Care Program. At press time, the Senate had not yet acted on the Continuing Resolution.
In total, the Continuing Resolution provides $170.27 billion for programs under the jurisdiction of Labor, Health and Human Services, and Education. Many health-related programs important to people living with MS including Medicare, Medicaid, and the National Institutes of Health fall under this category. While most programs remained the same under this agreement, there was one notable addition to the Continuing Resolution--addition of funding for the Cures Acceleration Network. This program was created under the Affordable Care Act and has been supported by the Society because of its focus on improving the translation of medical research advances into new drugs and therapies.
Happy Holidays from the National MS Society
As we celebrate the holiday season, the National MS Society would like to thank its nationwide network of passionate MS activists for their commitment and continuous advocacy for federal, state, and local policies that will improve the lives of people of people living with and affected by MS. Despite another difficult budget year, MS activists boldly championed requests for increases in funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP), the National Institutes of Health and for family caregivers through the Lifespan Respite Care Program. We also passed legislation in the U.S. House of Representatives (but not yet the Senate) that would create nationwide multiple sclerosis (MS) and Parkinson’s Disease surveillance systems, providing important data that could help uncover and inform promising areas of MS research and support the discovery of disease therapies, treatments, and one day—a cure.
Significant momentum was gained on new legislation that would allow Medicare to cover off label prescription drugs for people with MS and other chronic diseases. MS activists also advocated for introduction of a bill to provide federal funding for the establishment and enhancement of adult day achievement centers for people with MS and other similar chronic diseases. In addition to presenting at various Congressional briefings on Capitol Hill this year that brought attention to our issues, MS Activists helped ensure the passage of the formal Congressional recognition of MS Awareness Week.
In 2010, MS activists sent over 45,000 messages to Capitol Hill. Each one of these is vitally important and is an instrumental step moving us closer to a world free of MS. Thanks to your efforts, we are making considerable progress and laying valuable groundwork for the future. The National MS Society thanks you for your activism and wishes you a happy and healthy holiday season.
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
This week, Congress passed the Medicare and Medicaid Extenders Act of 2010. This bill will temporarily preserve Medicare reimbursement rates for physicians and protect Medicare beneficiaries’ access to Medicare physical therapy, occupational therapy, and speech language pathology for the next several months.
Currently, the Medicare program covers an estimated 47 million people, including 8 million people with disabilities who are under age 65. Nearly one-quarter of those living with MS rely on Medicare as their primary type of insurance. The sustainable growth rate (SGR) is a major component of Medicare’s current payment formula that determines annual updates and has the potential to drastically cut Medicare physician reimbursement rates, threatening access to services. Because of the negative real world impact, Congress has deferred the cuts several times—the last time delaying the cuts through December 31, 2010. The recently passed Medicare and Medicaid Extenders Act blocks a scheduled 25 percent cut that would have taken effect on January 1, 2011 and protects reimbursement through December 31, 2011.
The legislation also extends through December 31, 2011 the exceptions process for outpatient Medicare therapy caps. An arbitrary limit, the Medicare therapy cap places a combined limit of $1,860 on physical therapy and speech language pathology services and a separate $1,860 limit for occupational therapy services. In 2006, Congress authorized the Centers for Medicare and Medicaid Services (CMS) to create an exceptions process, whereby individuals can continue to access medically necessary physical therapy, occupational therapy, and speech language pathology services above cap levels as long as services met specified diagnostic and clinical criteria. The exceptions process has been extended several times and the Medicare and Medicaid Extenders Act of 2010 will continue to protect access to therapy services through December 31, 2011.
111th Congress Winds Down Without a Senate Vote on MS Registry Bill
With the lame duck session of Congress coming to an expected close by the end of next week, the Society is disappointed that the Senate has not taken up and voted on the National Neurological Disease Surveillance System Act (H.R.1362) to date. With limited time and over 400 House-passed bills awaiting a Senate vote, it seems there is little opportunity for our bill to make it to the Senate floor this session of Congress. While the prospects seem slim, it is not for a lack of passion or effort on behalf of our activists! The activists involved in this effort have been relentless in trying to move this forward and see this enacted and we are so thankful for all of their help and inspiration!
Federal Appropriations Being Determined for Fiscal Year 2011
The federal government has been operating under a Continuing Resolution (CR) that largely maintains current funding for federal departments and programs at fiscal year (FY) 2010 levels. This week, the House approved a longer term continuing resolution that will continue to freeze FY 2011 spending for the remainder of the fiscal year at FY 2010 levels.
Senate Democrats plan to try to substitute an omnibus bill that includes text from unfinished appropriations measures that alters some funding levels. Approved but unfinished appropriations measures have included significant increases for two programs important to people living with MS--MS research in the Congressionally Directed Medical Research Programs (CDMRP) and the Lifespan Respite Care Program. The Society recently sent a letter requesting that Congress maintain these increases for MS research in the CDMRP and the Lifespan Respite Care Program. At press time, the Senate had not yet acted on the Continuing Resolution.
In total, the Continuing Resolution provides $170.27 billion for programs under the jurisdiction of Labor, Health and Human Services, and Education. Many health-related programs important to people living with MS including Medicare, Medicaid, and the National Institutes of Health fall under this category. While most programs remained the same under this agreement, there was one notable addition to the Continuing Resolution--addition of funding for the Cures Acceleration Network. This program was created under the Affordable Care Act and has been supported by the Society because of its focus on improving the translation of medical research advances into new drugs and therapies.
Happy Holidays from the National MS Society
As we celebrate the holiday season, the National MS Society would like to thank its nationwide network of passionate MS activists for their commitment and continuous advocacy for federal, state, and local policies that will improve the lives of people of people living with and affected by MS. Despite another difficult budget year, MS activists boldly championed requests for increases in funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP), the National Institutes of Health and for family caregivers through the Lifespan Respite Care Program. We also passed legislation in the U.S. House of Representatives (but not yet the Senate) that would create nationwide multiple sclerosis (MS) and Parkinson’s Disease surveillance systems, providing important data that could help uncover and inform promising areas of MS research and support the discovery of disease therapies, treatments, and one day—a cure.
Significant momentum was gained on new legislation that would allow Medicare to cover off label prescription drugs for people with MS and other chronic diseases. MS activists also advocated for introduction of a bill to provide federal funding for the establishment and enhancement of adult day achievement centers for people with MS and other similar chronic diseases. In addition to presenting at various Congressional briefings on Capitol Hill this year that brought attention to our issues, MS Activists helped ensure the passage of the formal Congressional recognition of MS Awareness Week.
In 2010, MS activists sent over 45,000 messages to Capitol Hill. Each one of these is vitally important and is an instrumental step moving us closer to a world free of MS. Thanks to your efforts, we are making considerable progress and laying valuable groundwork for the future. The National MS Society thanks you for your activism and wishes you a happy and healthy holiday season.
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
Monday, December 6, 2010
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 December 9, January 11, and February 2 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:
December 9: 12 p.m. – 1 p.m.
January 11: 6 p.m. – 7 p.m.
February 2: 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.
To register or for more information, call 1-800-344-4867 and have your question ready or visit Ask the Employment Specialist: National MS Society to register for this program online.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work?
On December 9, January 11, and February 2 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:
December 9: 12 p.m. – 1 p.m.
January 11: 6 p.m. – 7 p.m.
February 2: 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.
To register or for more information, call 1-800-344-4867 and have your question ready or visit Ask the Employment Specialist: National MS Society to register for this program online.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Saturday, December 4, 2010
What Is an MS Exacerbation? What Are the Signs and Symptoms I Should Look for?
An exacerbation (also known as a relapse) is a sudden worsening of one or more MS symptoms or the appearance of new symptoms, which lasts at least 24 hours and is separated from a previous exacerbation by at least one month. A true MS exacerbation is caused by an area of inflammation in the CNS. Exacerbations can last anywhere from days to weeks, but also may last for months and can result in permanent added disability.[1] Following are some of the symptoms that may indicate a MS exacerbation; however, this is not a complete list.[2] If you are unsure if a symptom you are experiencing is a sign of an exacerbation or if you have a symptom that is worrying you, please talk to your doctor.
Symptoms:
* Numbness, weakness, feeling constantly tired
* Loss of muscle function (especially in your lower torso)
* Difficulty going to the bathroom
* Uncontrollable shaking (tremors or muscle spasms)
* Problems with walking or balance
* Difficulty speaking
* Problems with memory and attention
* Changes in your ability to see
Friday, November 5, 2010
Federal Focus - November 2010
S. 1273 Gets a Boost from Activists during the Congressional Recess
Although Congress has been on recess for the recent elections, activists have engaged in many different ways to push S.1273 forward in the Senate. Over the past few weeks, activists in key states have emailed, placed calls and visited their Senators to urge them to enact S.1273 this Congressional session. Even high-profile figures, such as four-star General Tommy Franks and entertainers, Alan and David Osmond, reached out to their respective Senators—Senator Coburn (OK) and Senator Hatch (UT) – to voice their support.
Congress will be back in session the week of November 15 and we need you to email your Senator to ensure S.1273 is passed before the 111th Congress adjourns. The House of Representatives passed the companion bill, H.R. 1362, the National Neurological Diseases Surveillance System Act, just before leaving for recess and Senate passage is the last significant procedural hurdle.
Only a few legislative days remain in this Congressional session, so we need your help today! Click here to take action and email your Senator today about the importance of establishing a surveillance system to gather important data and help us move closer to a world free of MS.
Remaining Work of the 111th Congress
With Election Day behind them, Congress is expected to return the week of November 15 to complete unfinished business. While their detailed schedule is yet to be determined, it is anticipated that Congress will address one or two outstanding health-related issues. One of the top issues is expected to be for Congress to act on delaying a scheduled 21.3% reduction in Medicare physician payments. Currently, the Medicare program covers an estimated 47 million people, including 8 million people with disabilities who are under age 65 and nearly one-quarter of those living with MS. MS activists and other concerned groups have repeatedly called on Congress to delay the scheduled 21.3% cut and help protect access to needed care. Temporary relief was provided in late June through a so-called “doc fix” that delayed the reimbursement cut until December 1, 2010. Congress therefore is expected to take action before December 1, but it is unclear for how long they will delay the cut.
Another issue expected to be center stage are the Fiscal Year (FY) 2011 appropriations. The federal government is currently operating under a Continuing Resolution (CR) that largely flat funds federal departments and programs at FY 2010 levels. This CR expires December 3, necessitating some sort of further action by Congress. The Society will be closely monitoring how Congress addresses completion of FY 2011 appropriations, as two of the Society’s 2010 priorities hinge on this decision: funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP) and funding for the Lifespan Respite Care Program.
Though the formal appropriations process is far from complete, early indications are positive for the funding levels of both CDMRP and Lifespan Respite. The House Appropriations Subcommittee on Defense approved more than a 20% increase for MS research in the CDMRP—for a total of $6 million. Both chambers urged an increase for Lifespan Respite, with the Senate approving the larger increase for a total of $7 million. The Society will continue to advocate for robust funding for MS research in the CDMRP and for Lifespan Respite as final determinations are made.
2011 Will Be the Year of the Caregiver
Over the past few months, the Society has been collaborating closely with the Administration on Aging (AoA) and other advocacy groups to put together a forum in celebration of caregiving on November 17. The event will specifically celebrate the 10th anniversary of the National Family Caregivers Support Program, with both former Assistant Secretary for Aging, Jeanette Takamura, and current Assistant Secretary for Aging, Kathy Greenlee attending to highlight achievements of the program. The focus of the day will be to reflect on the past, present and future of caregiving policies and programs in the United States. During this forum, a National MS Society staff member will be speaking on a panel about the unique issues that people caring for an individual with a disability face.
In addition to marking the 10 year anniversary, AoA will announce the launch 2011 as the Year of the Family Caregiver. During the following year, the Society will work on a number of initiatives focused on caregiving to raise awareness for this issue.
Although Congress has been on recess for the recent elections, activists have engaged in many different ways to push S.1273 forward in the Senate. Over the past few weeks, activists in key states have emailed, placed calls and visited their Senators to urge them to enact S.1273 this Congressional session. Even high-profile figures, such as four-star General Tommy Franks and entertainers, Alan and David Osmond, reached out to their respective Senators—Senator Coburn (OK) and Senator Hatch (UT) – to voice their support.
Congress will be back in session the week of November 15 and we need you to email your Senator to ensure S.1273 is passed before the 111th Congress adjourns. The House of Representatives passed the companion bill, H.R. 1362, the National Neurological Diseases Surveillance System Act, just before leaving for recess and Senate passage is the last significant procedural hurdle.
Only a few legislative days remain in this Congressional session, so we need your help today! Click here to take action and email your Senator today about the importance of establishing a surveillance system to gather important data and help us move closer to a world free of MS.
Remaining Work of the 111th Congress
With Election Day behind them, Congress is expected to return the week of November 15 to complete unfinished business. While their detailed schedule is yet to be determined, it is anticipated that Congress will address one or two outstanding health-related issues. One of the top issues is expected to be for Congress to act on delaying a scheduled 21.3% reduction in Medicare physician payments. Currently, the Medicare program covers an estimated 47 million people, including 8 million people with disabilities who are under age 65 and nearly one-quarter of those living with MS. MS activists and other concerned groups have repeatedly called on Congress to delay the scheduled 21.3% cut and help protect access to needed care. Temporary relief was provided in late June through a so-called “doc fix” that delayed the reimbursement cut until December 1, 2010. Congress therefore is expected to take action before December 1, but it is unclear for how long they will delay the cut.
Another issue expected to be center stage are the Fiscal Year (FY) 2011 appropriations. The federal government is currently operating under a Continuing Resolution (CR) that largely flat funds federal departments and programs at FY 2010 levels. This CR expires December 3, necessitating some sort of further action by Congress. The Society will be closely monitoring how Congress addresses completion of FY 2011 appropriations, as two of the Society’s 2010 priorities hinge on this decision: funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP) and funding for the Lifespan Respite Care Program.
Though the formal appropriations process is far from complete, early indications are positive for the funding levels of both CDMRP and Lifespan Respite. The House Appropriations Subcommittee on Defense approved more than a 20% increase for MS research in the CDMRP—for a total of $6 million. Both chambers urged an increase for Lifespan Respite, with the Senate approving the larger increase for a total of $7 million. The Society will continue to advocate for robust funding for MS research in the CDMRP and for Lifespan Respite as final determinations are made.
2011 Will Be the Year of the Caregiver
Over the past few months, the Society has been collaborating closely with the Administration on Aging (AoA) and other advocacy groups to put together a forum in celebration of caregiving on November 17. The event will specifically celebrate the 10th anniversary of the National Family Caregivers Support Program, with both former Assistant Secretary for Aging, Jeanette Takamura, and current Assistant Secretary for Aging, Kathy Greenlee attending to highlight achievements of the program. The focus of the day will be to reflect on the past, present and future of caregiving policies and programs in the United States. During this forum, a National MS Society staff member will be speaking on a panel about the unique issues that people caring for an individual with a disability face.
In addition to marking the 10 year anniversary, AoA will announce the launch 2011 as the Year of the Family Caregiver. During the following year, the Society will work on a number of initiatives focused on caregiving to raise awareness for this issue.
Wednesday, October 20, 2010
National Multiple Sclerosis Society, Greater New England Chapter Two great programs in Attleboro & Foxboro - Sign up today!
MS Product Fair: Improving Independence & Quality of Life
Please join the Greater New England Chapter and our co-sponsor, the MS Center at Sturdy Memorial Hospital for a presentation of assistive devices, products, and services designed to increase independence for persons with disabilities. Life with MS can be frustrating. The ability to complete what was once an easy task may become more difficult. However, there are numerous products to assist with mobility, grabbing, hearing, vision, organization, heat sensitivity, and much more that can be helpful to people with MS.
Representatives at vendor booth displays are available to assist you and answer questions about their products or services.
The MS Product Fair is an interactive program that allows you to try out a variety of products. A wheelchair van is on display. Refreshments are provided. Door prizes!
Location: Sturdy Memorial Hospital, Rice-Webb Auditorium, Attleboro, MA
Date: Monday, October 25, 2010
Time: 3 - 7 pm FREE! Please register by Friday, October 22.
Three easy ways to register:
Call: 1-800-344-4867, option 1
Email: Martha.Maynard@nmss.org
Register Online here
Cognifitness: A Mental Exercise Program
Up to 60% of people with MS experience cognitive changes. Learn exercise & strategies to help focus your attention, improve memory, planning & problem solving skills.
Guest Speaker: Nancy Lowenstein, OTR, Mount Auburn MS Center
Topics to be covered:
# Attention skills
# Memory Skills
# Executive Skills
Cost is $10 per person (includes materials and lunch)
Limit: Person with MS and 1 adult guest
Space is limited - pre-registration is required.
Location: Hockomock YMCA, Foxboro, MA
Date: Saturday, November 6, 2010
Time: 10am - 3pm
Fee: $10 per person (fee waiver available)
If you would like a fee reduction or waiver, please call the Chapter to register. Do not proceed to online registration page.
Please register by Monday, November 1
Three easy ways to register:
Call: 1-800-344-4867, option 1
Email: Martha.Maynard@nmss.org
Register Online here
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
Please join the Greater New England Chapter and our co-sponsor, the MS Center at Sturdy Memorial Hospital for a presentation of assistive devices, products, and services designed to increase independence for persons with disabilities. Life with MS can be frustrating. The ability to complete what was once an easy task may become more difficult. However, there are numerous products to assist with mobility, grabbing, hearing, vision, organization, heat sensitivity, and much more that can be helpful to people with MS.
Representatives at vendor booth displays are available to assist you and answer questions about their products or services.
The MS Product Fair is an interactive program that allows you to try out a variety of products. A wheelchair van is on display. Refreshments are provided. Door prizes!
Location: Sturdy Memorial Hospital, Rice-Webb Auditorium, Attleboro, MA
Date: Monday, October 25, 2010
Time: 3 - 7 pm FREE! Please register by Friday, October 22.
Three easy ways to register:
Call: 1-800-344-4867, option 1
Email: Martha.Maynard@nmss.org
Register Online here
Cognifitness: A Mental Exercise Program
Up to 60% of people with MS experience cognitive changes. Learn exercise & strategies to help focus your attention, improve memory, planning & problem solving skills.
Guest Speaker: Nancy Lowenstein, OTR, Mount Auburn MS Center
Topics to be covered:
# Attention skills
# Memory Skills
# Executive Skills
Cost is $10 per person (includes materials and lunch)
Limit: Person with MS and 1 adult guest
Space is limited - pre-registration is required.
Location: Hockomock YMCA, Foxboro, MA
Date: Saturday, November 6, 2010
Time: 10am - 3pm
Fee: $10 per person (fee waiver available)
If you would like a fee reduction or waiver, please call the Chapter to register. Do not proceed to online registration page.
Please register by Monday, November 1
Three easy ways to register:
Call: 1-800-344-4867, option 1
Email: Martha.Maynard@nmss.org
Register Online here
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
Friday, October 15, 2010
Greater New England Chapter Stanley F. Waterman Research Update and Annual Meeting of Members
Saturday, October 23, 2010
11:15 am - 3:00 pm
Lunch is provided
In addition to the Chapter-wide Annual Meeting, each state features a guest speaker, who addresses current and emerging MS research. This year we focus on our collective vision: a world free of MS. Research has never been more promising!
Maine: Nicholas G. LaRocca, PhD V.P., Health Care Delivery and Policy Research National Multiple Sclerosis Society Topic: MS Research You Might Not Know About
Massachusetts: Mark Freedman, MD Dir., Multiple Sclerosis Research Unit, Ottawa Hospital University of Ottawa, Ottawa, Canada Topic: Stem Cell Based Therapies: The Promise and Challenges of Treating MS.
New Hampshire: John Randolph PhD Clinical Neuropsychologist, Private practice, Lebanon, New Hampshire Topic: Cognitive Functioning in MS: An Update on What We Know
Vermont: Lloyd Kasper, MD Medical Director, Multiple Sclerosis Clinic Dartmouth Hitchcock Medical Center Topic: B cells and T cells in MS: In the Garden of Good and Evil
Four states, four locations!
Register now for the location nearest you:
# Hilton Garden Inn, Auburn, Maine
# Best Western Royal Plaza, Marlborough, Massachusetts
# Church Landing, Meredith, New Hampshire
# Killington Grand Resort, Killington, Vermont
Visit http://www.msnewengland.org/ to register for this program online.
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, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
National MS Society | Legal Notice/Privacy Policy | Email Preferences | Unsubscribe
National Multiple Sclerosis Society | 733 Third Avenue | New York, NY | 10017
Contact us at: http://www.nationalmssociety.org/ or 1-800-344-4867.
11:15 am - 3:00 pm
Lunch is provided
In addition to the Chapter-wide Annual Meeting, each state features a guest speaker, who addresses current and emerging MS research. This year we focus on our collective vision: a world free of MS. Research has never been more promising!
Maine: Nicholas G. LaRocca, PhD V.P., Health Care Delivery and Policy Research National Multiple Sclerosis Society Topic: MS Research You Might Not Know About
Massachusetts: Mark Freedman, MD Dir., Multiple Sclerosis Research Unit, Ottawa Hospital University of Ottawa, Ottawa, Canada Topic: Stem Cell Based Therapies: The Promise and Challenges of Treating MS.
New Hampshire: John Randolph PhD Clinical Neuropsychologist, Private practice, Lebanon, New Hampshire Topic: Cognitive Functioning in MS: An Update on What We Know
Vermont: Lloyd Kasper, MD Medical Director, Multiple Sclerosis Clinic Dartmouth Hitchcock Medical Center Topic: B cells and T cells in MS: In the Garden of Good and Evil
Four states, four locations!
Register now for the location nearest you:
# Hilton Garden Inn, Auburn, Maine
# Best Western Royal Plaza, Marlborough, Massachusetts
# Church Landing, Meredith, New Hampshire
# Killington Grand Resort, Killington, Vermont
Visit http://www.msnewengland.org/ to register for this program online.
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, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
National MS Society | Legal Notice/Privacy Policy | Email Preferences | Unsubscribe
National Multiple Sclerosis Society | 733 Third Avenue | New York, NY | 10017
Contact us at: http://www.nationalmssociety.org/ or 1-800-344-4867.
Wednesday, October 13, 2010
MS Cure Fund
When: Saturday, 10/30/10
Time: 9:00 AM to 3:00 PM EDT
Add to my calendar
Where: Beechwood Hotel
363 Plantation Street
Worcester, MA 01605
Driving Directions
EXHIBITORS:
Event Sponsored by:
Contact: MS Cure Fund, Inc.
info@mscurefund.org
(617) 375 - 9900
(617) 375 - 9909 fax
Tax ID # 36-4562602
Free Fall New England MS Health Fair
Come join the Central New England MS Community at our FREE Fall MS Health Fair.
This Educational Health Fair will provide:
1) Neurologists presenting on the newest and hottest MS topics.
2) Vendors exhibiting on MS products & services along with MS therapies;
(Avonex, Betaseron, Copaxone, Tysabri, Ampyra & Gilenya).
3) MS Advocates - mingle and learn about their personal experiences.
AGENDA:
9:00 am = REGISTRATION (morning coffee)
Visit Exhibitors
10:00 am = WELCOME remarks by MS Cure Fund
Featured Speaker: Peter Riskind, Ph.D., M.D. - Director of UMass Memorial MS Center
Topic: "Latest MS Research Update" followed by a Q&A session.
Speaker: Meredith W. Harper, Pharm.D., BCPS - clinical pharmacy specialist who majored in Neurology at UMASS Amherst.
Topics: "Disease Modifying Treatment of MS: Past, Present and Future".
12 noon = LUNCH - Visit Exhibitors & chat with MS Advocates
1:00 pm = (2) BREAK OUT SESSION(s) (pick one):
Option 1 = "Fatigue & Spasticity"
Carolina Ionete, MD, PhD.
UMass Memorial Medical MS Center
Option 2 = "Cognitive Issues in MS"
Maria Pilar Elisa Dayaw, M.D.
Director of Milford Regional Medical MS Center
2:15 pm = YOGA session
3:00 pm = END
Free parking ~ Handicap accessible ~ Complimentary lunch & beverages provided
Register Now!
Event Marketing by
Time: 9:00 AM to 3:00 PM EDT
Add to my calendar
Where: Beechwood Hotel
363 Plantation Street
Worcester, MA 01605
Driving Directions
EXHIBITORS:
Event Sponsored by:
Contact: MS Cure Fund, Inc.
info@mscurefund.org
(617) 375 - 9900
(617) 375 - 9909 fax
Tax ID # 36-4562602
Free Fall New England MS Health Fair
Come join the Central New England MS Community at our FREE Fall MS Health Fair.
This Educational Health Fair will provide:
1) Neurologists presenting on the newest and hottest MS topics.
2) Vendors exhibiting on MS products & services along with MS therapies;
(Avonex, Betaseron, Copaxone, Tysabri, Ampyra & Gilenya).
3) MS Advocates - mingle and learn about their personal experiences.
AGENDA:
9:00 am = REGISTRATION (morning coffee)
Visit Exhibitors
10:00 am = WELCOME remarks by MS Cure Fund
Featured Speaker: Peter Riskind, Ph.D., M.D. - Director of UMass Memorial MS Center
Topic: "Latest MS Research Update" followed by a Q&A session.
Speaker: Meredith W. Harper, Pharm.D., BCPS - clinical pharmacy specialist who majored in Neurology at UMASS Amherst.
Topics: "Disease Modifying Treatment of MS: Past, Present and Future".
12 noon = LUNCH - Visit Exhibitors & chat with MS Advocates
1:00 pm = (2) BREAK OUT SESSION(s) (pick one):
Option 1 = "Fatigue & Spasticity"
Carolina Ionete, MD, PhD.
UMass Memorial Medical MS Center
Option 2 = "Cognitive Issues in MS"
Maria Pilar Elisa Dayaw, M.D.
Director of Milford Regional Medical MS Center
2:15 pm = YOGA session
3:00 pm = END
Free parking ~ Handicap accessible ~ Complimentary lunch & beverages provided
Register Now!
Event Marketing by
Thursday, October 7, 2010
The National MS Society, Greater New England Chapter presents Complementary & Alternative Therapies in MS Treatment
Featuring neurologist & author Dr. Allen Bowling
Director of the Complementary and Alternative Medicine Service
Colorado Neurological Institute
Date/Time: Tuesday, October 19, 2010, 5:30 - 8:30 pm
Location: Sheraton Monarch Hotel, Springfield, Mass.
FREE. Pre-registration is required by October 14th. Dinner is provided.
Limit: Person with MS and one adult guest.
Join us for a free educational dinner seminar featuring Dr. Allen Bowling, Director of the Complementary and Alternative Medicine Service at the Colorado Neurological Institute (CNI). Dr. Bowling is also the Medical Director of the Multiple Sclerosis Service at CNI and Clinical Associate Professor of Neurology at the University of Colorado. He was the Medical Director of the Rocky Mountain MS Center from 2003-2007.
Dr. Bowling’s unique approach to MS treatment has been well received nationwide; he has authored or co-authored four books, including “Complementary and Alternative Medicine and Multiple Sclerosis” and “Multiple Sclerosis: The Guide to Treatment and Management.” Additional information about Dr. Bowling is available on his website, http://www.neurologycare.net/.
Dr. Bowling will be discussing current conventional medications used in MS, diet & supplements (including Vitamin D), exercise, wellness in MS, and symptom management. This is a great opportunity to hear an expert in this field and to get your questions answered!
For more information or to register, click here or call 1-800-344-4867.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Director of the Complementary and Alternative Medicine Service
Colorado Neurological Institute
Date/Time: Tuesday, October 19, 2010, 5:30 - 8:30 pm
Location: Sheraton Monarch Hotel, Springfield, Mass.
FREE. Pre-registration is required by October 14th. Dinner is provided.
Limit: Person with MS and one adult guest.
Join us for a free educational dinner seminar featuring Dr. Allen Bowling, Director of the Complementary and Alternative Medicine Service at the Colorado Neurological Institute (CNI). Dr. Bowling is also the Medical Director of the Multiple Sclerosis Service at CNI and Clinical Associate Professor of Neurology at the University of Colorado. He was the Medical Director of the Rocky Mountain MS Center from 2003-2007.
Dr. Bowling’s unique approach to MS treatment has been well received nationwide; he has authored or co-authored four books, including “Complementary and Alternative Medicine and Multiple Sclerosis” and “Multiple Sclerosis: The Guide to Treatment and Management.” Additional information about Dr. Bowling is available on his website, http://www.neurologycare.net/.
Dr. Bowling will be discussing current conventional medications used in MS, diet & supplements (including Vitamin D), exercise, wellness in MS, and symptom management. This is a great opportunity to hear an expert in this field and to get your questions answered!
For more information or to register, click here or call 1-800-344-4867.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Wednesday, October 6, 2010
Federal Focus - October 2010
House Passes HR 1362 and Sent to Senate for Consideration
Just before breaking for recess last week, the House of Representatives passed H.R. 1362, the National Neurological Diseases Surveillance System Act. Previously named the National MS and Parkinson’s Disease Registries Act, H.R. 1362 was expanded during an Energy and Commerce committee mark-up earlier this month. This modification would make the surveillance system available to all neurological conditions, while maintaining MS and Parkinson’s as a priority.
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis (MS) and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
While we have passed this bill in one chamber of Congress, the work to get this system in place is not done yet. To make this data system a reality, the Senate must now take action on the companion bill, S. 1273, before they adjourn for the year. Click here to ask your Senator to pass S. 1273 this session of Congress to establish a surveillance system for MS!
Federal Appropriations Update
Congress will need to continue addressing federal appropriations for Fiscal Year 2011 after the November elections, which includes MS priority issues like funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP), the Lifespan Respite Care Program, and the National Institutes of Health (NIH). Before they recessed, Congress passed a continuing resolution that keeps the government operating into the new fiscal year largely at FY 2010 funding levels. This continuing resolution will expire December 3.
MS research funding in the CDMRP is included in the Department of Defense appropriations bill, which to date has passed through the Subcommittee in the House and passed through the full Appropriations Committee in the Senate. One of the Society’s 2010 priority issues is to increase MS research funding in the CDMRP and early indications are that the House Subcommittee has provided such an increase—for a total of $6 million specifically designated for MS research. This would be an increase of over 20 percent in funding. The Senate, on the other hand, has provided funding for medical research, but without a specific MS program.
Funding for the Lifespan Respite Care Program and for the NIH is contained in the Labor, Health and Human Services (LHHS) appropriations bill. The House has passed its LHHS appropriations bill out of the Subcommittee and the Senate has passed its version out of the full Appropriations Committee. The Lifespan Respite Care Program, one of the Society’s priority issues for 2010, provides competitive grants to states to establish or enhance statewide lifespan respite programs serving family caregivers regardless of age or disability. Both chambers have urged an increase for Lifespan Respite, with the Senate providing the largest increase for a total of $7 million. The Senate has also approved a significant increase for the NIH--$1 billion above FY 2010 levels for a total of $32 billion. The NIH is the single largest source of biomedical research funding in the world and conducts and sponsors a majority of the MS related research carried out in the United States.
Bill Introduced to Support MS Achievement Centers
In late September, Congresswoman Barbara Lee (CA-9) introduced a bill to bolster achievement centers for people living with MS, the Adult Day Achievement Center Enhancement Act (H.R. 6208). This legislation would help sustain and grow Adult Day Achievement programs by establishing a new grant program within the Administration on Aging that is specifically designed to support Adult Day programs targeting a younger population of people, such as those living with multiple sclerosis (MS) and similar diseases.
The concept of this legislation is based upon the success of existing MS Adult Day Programs (MSADP). MSADPs provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.
Currently, however, few Adult Day programs are equipped to provide the younger disabled population with age-appropriate adult day programming. There are less than a dozen MS Adult Day Programs in the United States at present but increased federal funding via competitive grants could help promote more options for this population. We will continue to provide updates on ways to engage on this issue, so stay tuned!
Congress May Address Stem Cell Through Legislation
The U.S. Court of Appeals for the District of Columbia has lifted an injunction imposed by a federal judge in late August, allowing federal funding of embryonic stem cell research (ESCR) to temporarily continue while the case is heard on merits.
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. Rather than stop federal funding, more research is needed to better understand which stem cells, and from what sources, could hold significant promise for repairing damage and restoring function, as well as provide a better understanding of the underlying disease cause.
With the help of MS Activists, Congress in the past twice comfortably passed bi-partisan legislation permitting federal funding of ESCR, but both bills received presidential vetoes. In 2009, an Executive Order lifted previous restrictions on federal funding of ESCR and brought new hope to the millions of people living with chronic and debilitating diseases or disabilities. An August federal court ruling halted this progress by issuing a preliminary injunction against federal funding of ESCR. While the recent appeals court ruling provides temporary protection, legal battles in the court system continue and the only way to guarantee a permanent solution is to pass bi-partisan legislation.
Congress may address ESCR when it returns to Washington in November. Legislation has been introduced in both the House and Senate that places strict ethical and procedural limits on the use of federal funds, in line with the 2009 Executive Order. Stay tuned for further updates on legislation to protect federal funding of ESCR.
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
Just before breaking for recess last week, the House of Representatives passed H.R. 1362, the National Neurological Diseases Surveillance System Act. Previously named the National MS and Parkinson’s Disease Registries Act, H.R. 1362 was expanded during an Energy and Commerce committee mark-up earlier this month. This modification would make the surveillance system available to all neurological conditions, while maintaining MS and Parkinson’s as a priority.
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis (MS) and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
While we have passed this bill in one chamber of Congress, the work to get this system in place is not done yet. To make this data system a reality, the Senate must now take action on the companion bill, S. 1273, before they adjourn for the year. Click here to ask your Senator to pass S. 1273 this session of Congress to establish a surveillance system for MS!
Federal Appropriations Update
Congress will need to continue addressing federal appropriations for Fiscal Year 2011 after the November elections, which includes MS priority issues like funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP), the Lifespan Respite Care Program, and the National Institutes of Health (NIH). Before they recessed, Congress passed a continuing resolution that keeps the government operating into the new fiscal year largely at FY 2010 funding levels. This continuing resolution will expire December 3.
MS research funding in the CDMRP is included in the Department of Defense appropriations bill, which to date has passed through the Subcommittee in the House and passed through the full Appropriations Committee in the Senate. One of the Society’s 2010 priority issues is to increase MS research funding in the CDMRP and early indications are that the House Subcommittee has provided such an increase—for a total of $6 million specifically designated for MS research. This would be an increase of over 20 percent in funding. The Senate, on the other hand, has provided funding for medical research, but without a specific MS program.
Funding for the Lifespan Respite Care Program and for the NIH is contained in the Labor, Health and Human Services (LHHS) appropriations bill. The House has passed its LHHS appropriations bill out of the Subcommittee and the Senate has passed its version out of the full Appropriations Committee. The Lifespan Respite Care Program, one of the Society’s priority issues for 2010, provides competitive grants to states to establish or enhance statewide lifespan respite programs serving family caregivers regardless of age or disability. Both chambers have urged an increase for Lifespan Respite, with the Senate providing the largest increase for a total of $7 million. The Senate has also approved a significant increase for the NIH--$1 billion above FY 2010 levels for a total of $32 billion. The NIH is the single largest source of biomedical research funding in the world and conducts and sponsors a majority of the MS related research carried out in the United States.
Bill Introduced to Support MS Achievement Centers
In late September, Congresswoman Barbara Lee (CA-9) introduced a bill to bolster achievement centers for people living with MS, the Adult Day Achievement Center Enhancement Act (H.R. 6208). This legislation would help sustain and grow Adult Day Achievement programs by establishing a new grant program within the Administration on Aging that is specifically designed to support Adult Day programs targeting a younger population of people, such as those living with multiple sclerosis (MS) and similar diseases.
The concept of this legislation is based upon the success of existing MS Adult Day Programs (MSADP). MSADPs provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.
Currently, however, few Adult Day programs are equipped to provide the younger disabled population with age-appropriate adult day programming. There are less than a dozen MS Adult Day Programs in the United States at present but increased federal funding via competitive grants could help promote more options for this population. We will continue to provide updates on ways to engage on this issue, so stay tuned!
Congress May Address Stem Cell Through Legislation
The U.S. Court of Appeals for the District of Columbia has lifted an injunction imposed by a federal judge in late August, allowing federal funding of embryonic stem cell research (ESCR) to temporarily continue while the case is heard on merits.
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. Rather than stop federal funding, more research is needed to better understand which stem cells, and from what sources, could hold significant promise for repairing damage and restoring function, as well as provide a better understanding of the underlying disease cause.
With the help of MS Activists, Congress in the past twice comfortably passed bi-partisan legislation permitting federal funding of ESCR, but both bills received presidential vetoes. In 2009, an Executive Order lifted previous restrictions on federal funding of ESCR and brought new hope to the millions of people living with chronic and debilitating diseases or disabilities. An August federal court ruling halted this progress by issuing a preliminary injunction against federal funding of ESCR. While the recent appeals court ruling provides temporary protection, legal battles in the court system continue and the only way to guarantee a permanent solution is to pass bi-partisan legislation.
Congress may address ESCR when it returns to Washington in November. Legislation has been introduced in both the House and Senate that places strict ethical and procedural limits on the use of federal funds, in line with the 2009 Executive Order. Stay tuned for further updates on legislation to protect federal funding of ESCR.
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
Tuesday, October 5, 2010
Annual Meeting October 23 2010
Greater New England Chapter
Annual Meeting of Members and Research Update
Saturday, October 23, 2010
Four states, four locations!
Register now for the location nearest you:
# Hilton Garden Inn, Auburn, Maine
# Best Western Royal Plaza, Marlborough, Massachusetts
# Church Landing, Meredith, New Hampshire
# Killington Grand Resort, Killington, Vermont
Gather together with other chapter members to hear a report on the activities and accomplishments of the past year, plus a look ahead to plans for next year. After the Annual Meeting, catch up on some recent and exciting developments in the world of MS research. Each location will feature a keynote presentation with a nationally recognized MS researcher. Watch your mailbox for details.
The Annual Meeting of Members is held to elect the Board of Trustees, and to consider the Annual Report of the Board and the Treasurer’s Report of the Chapter accounts. Send Trustee nomination using the nomination form by October 1, 2010. The Nomination Committee, prior to the submission for election, will review nominations. Please provide the name, address, phone number, and brief background of the nominee, as well as your name, address and phone number. If you cannot attend but would like to vote by proxy, fill out the proxy form. To attend the Annual Meeting, register online using the links above or fill out the form on the back page of the Community PrograMS catalogue.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Annual Meeting of Members and Research Update
Saturday, October 23, 2010
Four states, four locations!
Register now for the location nearest you:
# Hilton Garden Inn, Auburn, Maine
# Best Western Royal Plaza, Marlborough, Massachusetts
# Church Landing, Meredith, New Hampshire
# Killington Grand Resort, Killington, Vermont
Gather together with other chapter members to hear a report on the activities and accomplishments of the past year, plus a look ahead to plans for next year. After the Annual Meeting, catch up on some recent and exciting developments in the world of MS research. Each location will feature a keynote presentation with a nationally recognized MS researcher. Watch your mailbox for details.
The Annual Meeting of Members is held to elect the Board of Trustees, and to consider the Annual Report of the Board and the Treasurer’s Report of the Chapter accounts. Send Trustee nomination using the nomination form by October 1, 2010. The Nomination Committee, prior to the submission for election, will review nominations. Please provide the name, address, phone number, and brief background of the nominee, as well as your name, address and phone number. If you cannot attend but would like to vote by proxy, fill out the proxy form. To attend the Annual Meeting, register online using the links above or fill out the form on the back page of the Community PrograMS catalogue.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Thursday, September 30, 2010
Ask Your Representative to Support MS Achievement Centers
Take Action!
Just last week, Congresswoman Barbara Lee (CA-9) introduced the Adult Day Achievement Center Enhancement Act. This legislation authorizes a total of $28 million over a period of 5 years to expand and enhance Adult Day Achievement Center programs for people living with MS and similar chronic conditions. Help provide support for people living with MS and their family caregivers by contacting your Representative today and urging him/her to cosponsor H.R. 6208!
The concept of this legislation is based upon the success of existing MS Adult Day Programs (MSADP). MSADPs provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.
There are less than a dozen MSADPs in the United States at present; thus, the vast majority of the MS population is denied access to these enormously beneficial programs. Enacting this legislation will give existing programs the chance to expand and will enable new ones to emerge. Please encourage your Representative to support H.R.6208 to help support these important programs!
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
Just last week, Congresswoman Barbara Lee (CA-9) introduced the Adult Day Achievement Center Enhancement Act. This legislation authorizes a total of $28 million over a period of 5 years to expand and enhance Adult Day Achievement Center programs for people living with MS and similar chronic conditions. Help provide support for people living with MS and their family caregivers by contacting your Representative today and urging him/her to cosponsor H.R. 6208!
The concept of this legislation is based upon the success of existing MS Adult Day Programs (MSADP). MSADPs provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.
There are less than a dozen MSADPs in the United States at present; thus, the vast majority of the MS population is denied access to these enormously beneficial programs. Enacting this legislation will give existing programs the chance to expand and will enable new ones to emerge. Please encourage your Representative to support H.R.6208 to help support these important programs!
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, September 29, 2010
House Passes H.R. 1362
Congress has heard your requests and the House of Representatives passed H.R. 1362, the National Neurological Diseases Surveillance System Act! Due to your countless e-mails, phone calls, and discussions, the House of Representatives passed H.R. 1362 late last night and this bill is one significant step closer to becoming law. For the past two years, we have been working hard along with our partners in the Parkinson’s community to make this a reality. Thank you!
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis (MS) and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
Last night’s passage in the House was historic, but we are not quite done yet. To make this data system a reality, the Senate must now take action on S. 1273. We will be contacting you again soon to ask you to continue your advocacy and urge your Senators to support passage of S. 1273 this Congress. So stay tuned but in the meantime enjoy this victory – you deserve it!
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
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis (MS) and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
Last night’s passage in the House was historic, but we are not quite done yet. To make this data system a reality, the Senate must now take action on S. 1273. We will be contacting you again soon to ask you to continue your advocacy and urge your Senators to support passage of S. 1273 this Congress. So stay tuned but in the meantime enjoy this victory – you deserve it!
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
Monday, September 27, 2010
House to Vote on MS Registry Bill
Great news! Congress has heard your requests and the House of Representatives will be considering H.R. 1362, the National Neurological Diseases Surveillance System Act, tomorrow on the House floor! This is an extremely critical point and your voice of support can help this bill get passed in the House. Take a few brief minutes to email your Member of Congress and urge his/her support of this bill's passage.
Just last week, the House Energy & Commerce Committee met to mark-up H.R. 1362. During this meeting, the National MS and Parkinson’s Disease Registries Act was expanded to make the surveillance system available to all neurological conditions, maintaining MS and Parkinson’s as a priority. The Committee unanimously passed the expanded bill, the National Neurological Diseases Surveillance System Act, by voice vote.
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure. Learn more about the bill.
Victory in the House will bring us further than we have ever been before, so please continue to voice your support! Take action now! Email your Representative in support of H.R. 1362 to establish a surveillance system for MS today!
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNet
Just last week, the House Energy & Commerce Committee met to mark-up H.R. 1362. During this meeting, the National MS and Parkinson’s Disease Registries Act was expanded to make the surveillance system available to all neurological conditions, maintaining MS and Parkinson’s as a priority. The Committee unanimously passed the expanded bill, the National Neurological Diseases Surveillance System Act, by voice vote.
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure. Learn more about the bill.
Victory in the House will bring us further than we have ever been before, so please continue to voice your support! Take action now! Email your Representative in support of H.R. 1362 to establish a surveillance system for MS today!
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNet
Sunday, September 26, 2010
Fingolimod Receives FDA Approval as First Oral MS Treatment
MSeptember 22, 2010 — The US Food and Drug Administration (FDA) today announced approval of fingolimod (Gilenya, Novartis), the first of the long-anticipated oral treatments for multiple sclerosis (MS). Fingolimod is approved to reduce relapses and delay disability progression in patients with relapsing forms of MS, an FDA release notes.
"Gilenya is the first oral drug that can slow the progression of disability and reduce the frequency and severity of symptoms in MS, offering patients an alternative to the currently available injectable therapies," Russell Katz, MD, director of the Division of Neurology Products at the Center for Drug Evaluation and Research, said in the FDA statement.
Fingolimod (Gilenya)
Patients should be monitored for bradycardia when starting fingolimod therapy, and treatment is also associated with an increased risk for infection, the release adds. Macular edema has also occurred, and ophthalmologic evaluation is recommended for those taking the drug.
A release from Novartis adds that fingolimod has been approved with a Risk Evaluation and Mitigation Strategy (REMS) to "inform patients and healthcare providers on the safe use and serious risks of Gilenya in treating relapsing forms of MS. The approved REMS includes a medication guide for patients and a letter and safety information guide for healthcare providers."
The company has also initiated a 5-year, worldwide postauthorization safety study to monitor particular safety outcomes and a voluntary pregnancy registry to provide more data on use of fingolimod in women with MS who are pregnant or may become pregnant.
The approval was largely expected after fingolimod received a unanimous endorsement from the FDA's Peripheral and Central Nervous System Drugs Advisory Committee in June.
Given orally, fingolimod acts as a superagonist to sphingosine-1-phosphate receptors on the surface of thymocytes and lymphocytes, reducing the overall number of circulating lymphocytes available to mount an autoimmune reaction to the myelin sheath surrounding axons in MS.
The most frequent adverse reactions reported by patients taking fingolimod in clinical trials include headache, influenza, diarrhea, back pain, elevation of liver enzyme levels, and cough, the FDA statement notes.
Fingolimod was approved in the 0.5-mg dose, the lower of 2 doses investigated in phase 3 trials. The FTY720 Research Evaluating Effects of Daily Oral therapy in Multiple Sclerosis (FREEDOMS) trial and the TRial Assessing injectable interferoN vS FTY720 Oral in RrMS (TRANSFORMS) showed benefit with fingolimod against placebo and against interferon beta, respectively, in reducing relapse rates and new or enlarging lesions on magnetic resonance imaging.
In FREEDOMS, with 24 months of follow-up, there was also less risk of progression of disability with fingolimod vs placebo. The trials were both published in the January 20, 2010, issue of the New England Journal of Medicine.
Two deaths were seen during the TRANSFORMS study, both in the higher-dose group; 1 death was attributed to disseminated primary varicella zoster and the other to herpes simplex encephalitis. Other adverse events with fingolimod in that study included nonfatal herpes virus infections, skin cancer, and elevated liver enzymes.
In FREEDOMS, causes of study discontinuation included bradycardia and atrioventricular conduction block with fingolimod on drug initiation, macular edema, elevated liver enzymes, and mild hypertension. No increase was seen in cancer risk, although the researcher cautioned that longer follow-up is necessary because the risk for cancer is potentially increased by any immunomodulatory agent.
"Gilenya is the first oral drug that can slow the progression of disability and reduce the frequency and severity of symptoms in MS, offering patients an alternative to the currently available injectable therapies," Russell Katz, MD, director of the Division of Neurology Products at the Center for Drug Evaluation and Research, said in the FDA statement.
Fingolimod (Gilenya)
Patients should be monitored for bradycardia when starting fingolimod therapy, and treatment is also associated with an increased risk for infection, the release adds. Macular edema has also occurred, and ophthalmologic evaluation is recommended for those taking the drug.
A release from Novartis adds that fingolimod has been approved with a Risk Evaluation and Mitigation Strategy (REMS) to "inform patients and healthcare providers on the safe use and serious risks of Gilenya in treating relapsing forms of MS. The approved REMS includes a medication guide for patients and a letter and safety information guide for healthcare providers."
The company has also initiated a 5-year, worldwide postauthorization safety study to monitor particular safety outcomes and a voluntary pregnancy registry to provide more data on use of fingolimod in women with MS who are pregnant or may become pregnant.
The approval was largely expected after fingolimod received a unanimous endorsement from the FDA's Peripheral and Central Nervous System Drugs Advisory Committee in June.
Given orally, fingolimod acts as a superagonist to sphingosine-1-phosphate receptors on the surface of thymocytes and lymphocytes, reducing the overall number of circulating lymphocytes available to mount an autoimmune reaction to the myelin sheath surrounding axons in MS.
The most frequent adverse reactions reported by patients taking fingolimod in clinical trials include headache, influenza, diarrhea, back pain, elevation of liver enzyme levels, and cough, the FDA statement notes.
Fingolimod was approved in the 0.5-mg dose, the lower of 2 doses investigated in phase 3 trials. The FTY720 Research Evaluating Effects of Daily Oral therapy in Multiple Sclerosis (FREEDOMS) trial and the TRial Assessing injectable interferoN vS FTY720 Oral in RrMS (TRANSFORMS) showed benefit with fingolimod against placebo and against interferon beta, respectively, in reducing relapse rates and new or enlarging lesions on magnetic resonance imaging.
In FREEDOMS, with 24 months of follow-up, there was also less risk of progression of disability with fingolimod vs placebo. The trials were both published in the January 20, 2010, issue of the New England Journal of Medicine.
Two deaths were seen during the TRANSFORMS study, both in the higher-dose group; 1 death was attributed to disseminated primary varicella zoster and the other to herpes simplex encephalitis. Other adverse events with fingolimod in that study included nonfatal herpes virus infections, skin cancer, and elevated liver enzymes.
In FREEDOMS, causes of study discontinuation included bradycardia and atrioventricular conduction block with fingolimod on drug initiation, macular edema, elevated liver enzymes, and mild hypertension. No increase was seen in cancer risk, although the researcher cautioned that longer follow-up is necessary because the risk for cancer is potentially increased by any immunomodulatory agent.
Thursday, September 23, 2010
IRS Taxpayer Assistance Center Open House
Date: Saturday, September 25
Time: 9 am to 2 pm
Location: the Taxpayer Assistance Center near you
For location near you Call: 1-800-906-9887
Come let the IRS help solve your tax problems.
# Owe taxes? Can’t pay?
# Received an IRS notice?
# Have questions about tax law?
# Want to know about available IRS credits?
# Need tax returns filed? WE CAN DO IT.*
* 1040EZ, 1040A, 1040 and Schedules A, B, C-EZ, EIC, L, M, R, SE, prior year returns and Form 2290
Veterans and persons with disabilities are our special focus for this Saturday event - IRS partners will demonstrate many services and products just for you, in some locations.
Taxpayers requiring special services, such as interpretation for the deaf or hard of hearing, should call the local Taxpayer Assistance Center ahead of time to schedule an appointment.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Time: 9 am to 2 pm
Location: the Taxpayer Assistance Center near you
For location near you Call: 1-800-906-9887
Come let the IRS help solve your tax problems.
# Owe taxes? Can’t pay?
# Received an IRS notice?
# Have questions about tax law?
# Want to know about available IRS credits?
# Need tax returns filed? WE CAN DO IT.*
* 1040EZ, 1040A, 1040 and Schedules A, B, C-EZ, EIC, L, M, R, SE, prior year returns and Form 2290
Veterans and persons with disabilities are our special focus for this Saturday event - IRS partners will demonstrate many services and products just for you, in some locations.
Taxpayers requiring special services, such as interpretation for the deaf or hard of hearing, should call the local Taxpayer Assistance Center ahead of time to schedule an appointment.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Tuesday, September 21, 2010
Annual Meeting October 23 2010
Greater New England Chapter
Annual Meeting of Members and Research Update
Saturday, October 23, 2010
Four states, four locations!
Register now for the location nearest you:
# Hilton Garden Inn, Auburn, Maine
# Best Western Royal Plaza, Marlborough, Massachusetts
# Church Landing, Meredith, New Hampshire
# Killington Grand Resort, Killington, Vermont
Gather together with other chapter members to hear a report on the activities and accomplishments of the past year, plus a look ahead to plans for next year. After the Annual Meeting, catch up on some recent and exciting developments in the world of MS research. Each location will feature a keynote presentation with a nationally recognized MS researcher. Watch your mailbox for details.
The Annual Meeting of Members is held to elect the Board of Trustees, and to consider the Annual Report of the Board and the Treasurer’s Report of the Chapter accounts. Send Trustee nomination using the nomination form by October 1, 2010. The Nomination Committee, prior to the submission for election, will review nominations. Please provide the name, address, phone number, and brief background of the nominee, as well as your name, address and phone number. If you cannot attend but would like to vote by proxy, fill out the proxy form. To attend the Annual Meeting, register online using the links above or fill out the form on the back page of the Community PrograMS catalogue.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Annual Meeting of Members and Research Update
Saturday, October 23, 2010
Four states, four locations!
Register now for the location nearest you:
# Hilton Garden Inn, Auburn, Maine
# Best Western Royal Plaza, Marlborough, Massachusetts
# Church Landing, Meredith, New Hampshire
# Killington Grand Resort, Killington, Vermont
Gather together with other chapter members to hear a report on the activities and accomplishments of the past year, plus a look ahead to plans for next year. After the Annual Meeting, catch up on some recent and exciting developments in the world of MS research. Each location will feature a keynote presentation with a nationally recognized MS researcher. Watch your mailbox for details.
The Annual Meeting of Members is held to elect the Board of Trustees, and to consider the Annual Report of the Board and the Treasurer’s Report of the Chapter accounts. Send Trustee nomination using the nomination form by October 1, 2010. The Nomination Committee, prior to the submission for election, will review nominations. Please provide the name, address, phone number, and brief background of the nominee, as well as your name, address and phone number. If you cannot attend but would like to vote by proxy, fill out the proxy form. To attend the Annual Meeting, register online using the links above or fill out the form on the back page of the Community PrograMS catalogue.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Friday, September 10, 2010
Self-Employment for Individuals with Disabilities FREE On-Line Course
Dates: September 27 through October 31, 2010
Deadline to register: September 14
Self employment and small business are a defining characteristic of America’s economic landscape, and present a tremendous opportunity for those most challenged by the competitive labor market. Self-employment is increasingly recognized as a viable employment option for people with disabilities. This online course will cover the basics and frequently asked questions that individuals living with MS may have when thinking about starting a business.
• How can I determine if self-employment is for me?
• Where can I get money to start a business?
• Can vocational rehabilitation agencies support self-employment?
• How can a person obtain support from community and business-related agencies such as Small Business Development Centers?
The course will cover the following topics:
• Writing a Business Plan
• Conducting a Feasibility Study
• Accessing Community Supports
• Identifying Funding
• Using Work Incentives
Course Schedule
Week of Sept 27 Self-Employment Overview
Week of Oct 4 Social Security Work Incentives, Medicaid Waivers, and Self-Employment
Week of Oct 11 Accessing Support Services from Vocational Rehabilitation and Community Rehabilitation Programs
Week of Oct 18 Community Supports for Self-Employment
Week of Oct 25 Quick Launch Business Start-Up
Overview Information: ALL courses are web-based. The lectures are in audio format, and you must have the technical requirements for the course as described below to enroll. Information for a specific lesson will be available by 9:00 a.m. (eastern) on the first date listed for any given lesson. The course includes five lessons. Each lesson lasts one week and should take approximately four to five hours to complete. Weekly lessons include an online discussion forum, audio lectures, and select readings. All participants will be assigned to groups. These groups will be asked to correspond with each other on the course bulletin boards. In addition, participants will have the opportunity to ask questions of nationally known experts in self –employment.
Technical Requirements: You will be able to log on to the course at any time of the day and access the audio lectures. Each person MUST have an individual e-mail account to register. If you do not already have an e-mail address, you can set one up, free of charge at www.yahoo.com, www.gmail.com, and many other free services. Updates and feedback on the course activities will be sent via e-mail. Participants must be able to receive and send messages in order to benefit from this online experience.
A certificate of completion will be issued to those who participate in the discussion boards and complete a final essay on the course materials. Participants MUST finish all required assignments within the specified time frame in order to receive the certificate of completion from Virginia Commonwealth University.
Confirmation & log-in directions will be sent to confirmed registrants
Register online for this program
Deadline to register: September 14
Space is limited – Adults with MS Only
This course is being provided to the National MS Society by START-UP/USA a partnership between Virginia Commonwealth University and Griffin-Hammis and Associates, LLC.
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, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Deadline to register: September 14
Self employment and small business are a defining characteristic of America’s economic landscape, and present a tremendous opportunity for those most challenged by the competitive labor market. Self-employment is increasingly recognized as a viable employment option for people with disabilities. This online course will cover the basics and frequently asked questions that individuals living with MS may have when thinking about starting a business.
• How can I determine if self-employment is for me?
• Where can I get money to start a business?
• Can vocational rehabilitation agencies support self-employment?
• How can a person obtain support from community and business-related agencies such as Small Business Development Centers?
The course will cover the following topics:
• Writing a Business Plan
• Conducting a Feasibility Study
• Accessing Community Supports
• Identifying Funding
• Using Work Incentives
Course Schedule
Week of Sept 27 Self-Employment Overview
Week of Oct 4 Social Security Work Incentives, Medicaid Waivers, and Self-Employment
Week of Oct 11 Accessing Support Services from Vocational Rehabilitation and Community Rehabilitation Programs
Week of Oct 18 Community Supports for Self-Employment
Week of Oct 25 Quick Launch Business Start-Up
Overview Information: ALL courses are web-based. The lectures are in audio format, and you must have the technical requirements for the course as described below to enroll. Information for a specific lesson will be available by 9:00 a.m. (eastern) on the first date listed for any given lesson. The course includes five lessons. Each lesson lasts one week and should take approximately four to five hours to complete. Weekly lessons include an online discussion forum, audio lectures, and select readings. All participants will be assigned to groups. These groups will be asked to correspond with each other on the course bulletin boards. In addition, participants will have the opportunity to ask questions of nationally known experts in self –employment.
Technical Requirements: You will be able to log on to the course at any time of the day and access the audio lectures. Each person MUST have an individual e-mail account to register. If you do not already have an e-mail address, you can set one up, free of charge at www.yahoo.com, www.gmail.com, and many other free services. Updates and feedback on the course activities will be sent via e-mail. Participants must be able to receive and send messages in order to benefit from this online experience.
A certificate of completion will be issued to those who participate in the discussion boards and complete a final essay on the course materials. Participants MUST finish all required assignments within the specified time frame in order to receive the certificate of completion from Virginia Commonwealth University.
Confirmation & log-in directions will be sent to confirmed registrants
Register online for this program
Deadline to register: September 14
Space is limited – Adults with MS Only
This course is being provided to the National MS Society by START-UP/USA a partnership between Virginia Commonwealth University and Griffin-Hammis and Associates, LLC.
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, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Ensure Stem Cell Legislation Gets Priority Attention
Two weeks ago, a federal judge issued a preliminary injunction halting all federal funding for human embryonic stem cell research (ESCR). This was a huge setback on the achievements that MS Activists have fought hard to attain in our efforts to move us closer to a world free of multiple sclerosis. Fortunately, just today, the DC Court of Appeals sided with the Department of Justice and stopped the preliminary injunction from halting federal funding for human embryonic stem cell research. This ruling is temporary and only in place while the full arguments are heard in the Court of Appeals. These full arguments could occur later this month. The Director of the National Institutes of Health (NIH), Dr. Francis Collins, indicated emphatically that he views the attempts to block federal funding as a major crisis in science and that delays will cause irreparable damage to critical research being conducted utilizing stem cells.
With the help of MS Activists, Congress twice comfortably passed bi-partisan legislation permitting federal funding of ESCR, but both bills received presidential vetoes. However, in 2009 an Executive Order lifted previous restrictions on federal funding of ESCR and brought new hope to the millions of people living with chronic and debilitating diseases or disabilities. Click here to see the Society’s historical work with ESCR.
The current judicial proceedings threaten the progress we have made in stem cell research. Once again, MS Activists must mobilize to ensure that scientists and researchers have the funding and authority they need to explore this promising field of ESCR.
While legal battles in the court system are underway, the only way to guarantee a permanent solution is to pass bi-partisan legislation. Congress must make it a priority to secure a legislative fix to this situation immediately. There are already bi-partisan efforts underway, but we need broad support to fuel momentum.
Congress will soon be back from its summer recess but will only have a few weeks before it recesses again for the November election. That time between Congressional recesses may be the last opportunity to secure needed action from the 111th Congress.
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.
Ultimately, more research is needed to better understand which stem cells, and from what sources, could hold significant promise for repairing damage and restoring function, as well as provide a better understanding of the underlying disease cause.
Click here to email your Members of Congress today and ask them to make stem cell research legislation a priority this session.
Lifespan Respite Grants to 12 States Announced
On September 7, the U.S. Administration on Aging announced grant awards totaling approximately $2.25 million to twelve states to implement the Lifespan Respite Care Program. Grant awards were made to the following states: Delaware, Kansas, Louisiana, Massachusetts, Minnesota, Nebraska, New York, Oklahoma, Pennsylvania, Washington, Wisconsin, and Utah.
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 to be closer to the individual with MS and involved in care decisions. Respite provides temporary relief to caregivers from the ongoing responsibility of caring for individuals of all ages with special needs—including those living with MS. The Lifespan Respite Care Program was enacted in 2006 and is intended to enable states to better coordinate existing respite services, identify service gaps, and create and monitor new respite services while providing opportunities to recruit, train and support paid and volunteer respite providers and raise public awareness about the need for and importance of respite services.
The grants announced on September 7 represent the Fiscal Year 2010 funding. The Society continues to advocate for increased funding for Lifespan Respite in Fiscal Year 2011. The Senate Appropriations Committee recently approved an increase, for a total appropriation of $7 million for Lifespan Respite. Stay tuned for opportunities to weigh in with your federal lawmakers regarding the Lifespan Respite Care Program.
With the help of MS Activists, Congress twice comfortably passed bi-partisan legislation permitting federal funding of ESCR, but both bills received presidential vetoes. However, in 2009 an Executive Order lifted previous restrictions on federal funding of ESCR and brought new hope to the millions of people living with chronic and debilitating diseases or disabilities. Click here to see the Society’s historical work with ESCR.
The current judicial proceedings threaten the progress we have made in stem cell research. Once again, MS Activists must mobilize to ensure that scientists and researchers have the funding and authority they need to explore this promising field of ESCR.
While legal battles in the court system are underway, the only way to guarantee a permanent solution is to pass bi-partisan legislation. Congress must make it a priority to secure a legislative fix to this situation immediately. There are already bi-partisan efforts underway, but we need broad support to fuel momentum.
Congress will soon be back from its summer recess but will only have a few weeks before it recesses again for the November election. That time between Congressional recesses may be the last opportunity to secure needed action from the 111th Congress.
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.
Ultimately, more research is needed to better understand which stem cells, and from what sources, could hold significant promise for repairing damage and restoring function, as well as provide a better understanding of the underlying disease cause.
Click here to email your Members of Congress today and ask them to make stem cell research legislation a priority this session.
Lifespan Respite Grants to 12 States Announced
On September 7, the U.S. Administration on Aging announced grant awards totaling approximately $2.25 million to twelve states to implement the Lifespan Respite Care Program. Grant awards were made to the following states: Delaware, Kansas, Louisiana, Massachusetts, Minnesota, Nebraska, New York, Oklahoma, Pennsylvania, Washington, Wisconsin, and Utah.
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 to be closer to the individual with MS and involved in care decisions. Respite provides temporary relief to caregivers from the ongoing responsibility of caring for individuals of all ages with special needs—including those living with MS. The Lifespan Respite Care Program was enacted in 2006 and is intended to enable states to better coordinate existing respite services, identify service gaps, and create and monitor new respite services while providing opportunities to recruit, train and support paid and volunteer respite providers and raise public awareness about the need for and importance of respite services.
The grants announced on September 7 represent the Fiscal Year 2010 funding. The Society continues to advocate for increased funding for Lifespan Respite in Fiscal Year 2011. The Senate Appropriations Committee recently approved an increase, for a total appropriation of $7 million for Lifespan Respite. Stay tuned for opportunities to weigh in with your federal lawmakers regarding the Lifespan Respite Care Program.
Wednesday, September 8, 2010
Fall Walk MS
‘Register for Walk MS‘
Walk MS is a simple, but incredibly powerful way
for you to create hope for the future.
Walk MS is our rallying point, a time and a place
for us to stand together and to be together — to
help raise crucial funds that support cutting-edge
research, drive change through advocacy, and
facilitate professional education, while providing
education, support, and services that help people
with MS move their lives forward.
Saturday, September 11 Sunday, September 26
Brewster, MA
Cape Cod Sea Camps Falmouth, MA
Mullen-Hall School
Saturday, September 25
Greenfield, MA
Greenfield High School
The Berkshires, MA
Taconic High School,
Pittsfield
Sturbridge, MA
Sturbridge Town Common
St. Johnsbury, VT
St. Johnsbury School Keene, NH
Wheelock Park
The primary goal of Walk MS is to raise funds to help people who
have MS and their families. All walkers 12 years old and above are
required to turn in at least $25 by Walk Day. If you need help, please
contact walkMSgne@nmss.org or 1-800-344-4867.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Tuesday, August 31, 2010
MSConnection
Table of Contents — Summer 2010 Issue
Bike MS in Maine
Bike MS in Maine
Features
* Annual Meeting of Members and Research Update
* Bike MS Rides Back to Back in Maine and Vermont
* Medical Student Fellowship
* MS Vacation Week
News
* From the President
* The Society Responds to CCSVI Findings
* ADA Celebrates 20 Years
* What’s New in MS Research and Treatment
* MS World Welcomes Your Work
Newly Diagnosed
* Have A Question?
Programs
* Need Help Paying for MS Drugs?
* New! Greater New England Chat Room
* Program Highlights
* Knowledge is Power
Living with MS
* A Wheelchair at the Airport? You Bet!
* Self-Advocate Toward a Better Life
Research
* Research Advocate
* Study May Lead to Individualized Treatment
* Possible Source of Some Depression in MS Identified
* FDA Agrees to Fast Track New MS Drug
* Low-Dose Naltrexone May Improve Quality of Life
* What Comes First— Epstein-Barr or MS?
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
Volunteers
* Fall Volunteer Opportunities
* Bike MS Volunteers
* Community Access Monitor Two Day Training
* Stephanie’s Walk for Mom
* Looking for a Way to Make a Difference?
Fundraising
* Bike MS: Cape Cod Getaway
* Remember the Occasion with a Gift
* Upcoming Fundraising Events
o Walk MS: Fall Walks
o Vermont Dinner of Champions, September 14, Burlington, Vt.
o Women on the Move Luncheon, September 23, Quechee, Vt.
o Bike MS: Bike & Hike the Berkshires, September 25
o Fashion Plates, November 19
o Boston Volvo 5K Road Race, November 25
Calendar of Events - see current calendar
Bike MS in Maine
Bike MS in Maine
Features
* Annual Meeting of Members and Research Update
* Bike MS Rides Back to Back in Maine and Vermont
* Medical Student Fellowship
* MS Vacation Week
News
* From the President
* The Society Responds to CCSVI Findings
* ADA Celebrates 20 Years
* What’s New in MS Research and Treatment
* MS World Welcomes Your Work
Newly Diagnosed
* Have A Question?
Programs
* Need Help Paying for MS Drugs?
* New! Greater New England Chat Room
* Program Highlights
* Knowledge is Power
Living with MS
* A Wheelchair at the Airport? You Bet!
* Self-Advocate Toward a Better Life
Research
* Research Advocate
* Study May Lead to Individualized Treatment
* Possible Source of Some Depression in MS Identified
* FDA Agrees to Fast Track New MS Drug
* Low-Dose Naltrexone May Improve Quality of Life
* What Comes First— Epstein-Barr or MS?
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
Volunteers
* Fall Volunteer Opportunities
* Bike MS Volunteers
* Community Access Monitor Two Day Training
* Stephanie’s Walk for Mom
* Looking for a Way to Make a Difference?
Fundraising
* Bike MS: Cape Cod Getaway
* Remember the Occasion with a Gift
* Upcoming Fundraising Events
o Walk MS: Fall Walks
o Vermont Dinner of Champions, September 14, Burlington, Vt.
o Women on the Move Luncheon, September 23, Quechee, Vt.
o Bike MS: Bike & Hike the Berkshires, September 25
o Fashion Plates, November 19
o Boston Volvo 5K Road Race, November 25
Calendar of Events - see current calendar
Saturday, August 28, 2010
A MEDSCAPECME SPECIAL REPORT
Update in Early Multiple Sclerosis, Volume 1 MedscapeCME
August 2010
INTRODUCTION
Welcome to the free, CME and nurse CE-certified newsletter, "Achieving Comprehensive Care in Multiple Sclerosis" (MS), focused on the most current management strategies for MS. This newsletter delivers a single CME/CE activity with easy-to-navigate links to original expert interviews, articles, case studies, and conference reports, all of which must be read before being eligible to take the post-test.
Contents of This CME Activity
Clinical Focus: How to Choose an Immunomodulator in 2010 and Beyond
How do you determine the appropriate disease-modifying agent for patients who have early MS or relapsing-remitting disease? What should be your criteria for switching or adding therapy?
Conference Summary: Treating the Many Faces of MS: Reflections From CMSC 2010
Is there value in life-coaching, wellness education, and strength and fitness training in MS? Select abstracts from CMSC 2010 on these and on treatment and adherence in early MS are highlighted.
Expert Interview: Tuning in to the Needs of Patients With Early Multiple Sclerosis
Past and current presidents of CMSC, Colleen Harris and Dr. Michael Kaufman, discuss what clinicians should be aware of when caring for patients who have newly diagnosed MS.
Update in Early Multiple Sclerosis, Volume 1 Special Report is supported by an independent educational grant from Acorda.
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MedscapeCME
Member Services
370 Seventh Avenue
New York, NY 10001
August 2010
INTRODUCTION
Welcome to the free, CME and nurse CE-certified newsletter, "Achieving Comprehensive Care in Multiple Sclerosis" (MS), focused on the most current management strategies for MS. This newsletter delivers a single CME/CE activity with easy-to-navigate links to original expert interviews, articles, case studies, and conference reports, all of which must be read before being eligible to take the post-test.
Contents of This CME Activity
Clinical Focus: How to Choose an Immunomodulator in 2010 and Beyond
How do you determine the appropriate disease-modifying agent for patients who have early MS or relapsing-remitting disease? What should be your criteria for switching or adding therapy?
Conference Summary: Treating the Many Faces of MS: Reflections From CMSC 2010
Is there value in life-coaching, wellness education, and strength and fitness training in MS? Select abstracts from CMSC 2010 on these and on treatment and adherence in early MS are highlighted.
Expert Interview: Tuning in to the Needs of Patients With Early Multiple Sclerosis
Past and current presidents of CMSC, Colleen Harris and Dr. Michael Kaufman, discuss what clinicians should be aware of when caring for patients who have newly diagnosed MS.
Update in Early Multiple Sclerosis, Volume 1 Special Report is supported by an independent educational grant from Acorda.
User Support
Unsubscribe from this MedscapeCME newsletter.
Unsubscribe from all MedscapeCME mailing lists.
I forgot my Username and Password.
This message was sent to: jswdoyle@sbcglobal.net
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370 Seventh Avenue
New York, NY 10001
Friday, August 6, 2010
Federal Focus - August 2010
Support the Part D Off-label Prescription Parity Act
The National MS Society worked closely with Representatives Mary Jo Kilroy (OH-15) and William Thornberry (TX-13), noted clinicians, and other health organizations to draft, name, and introduce legislation that would help people living with MS and other chronic conditions access safe and effective treatment. The Part D Off-label Prescription Parity Act (H.R. 5732) was introduced on July 14 and would allow Medicare Part D carriers to cover the "off-label" use of drugs prescribed to people living with chronic diseases, including MS, when its use is supported by peer-reviewed medical literature. Doctors, based on existing medical literature and their professional judgment, routinely prescribe medications for "off-label" uses, meaning the drugs are used for purposes other than those approved by the Food and Drug Administration (FDA).
Currently, many people on Medicare who live with MS and other chronic conditions are unable to access some safe and effective medications because of inconsistent Medicare policies. Medicare Part D prohibits coverage of drugs for disorders other than those specifically approved by the FDA. However, exceptions are made for those individuals living with cancer and other Medicare programs provide coverage of off label indications. H.R. 5732 would bring parity to Medicare policy and allow people living with MS to access a variety of prescription drugs such as Modafinil (aka Provigil). Modafinil is a drug traditionally used to treat narcolepsy but that has shown significant improvement in relieving fatigue in people living with MS.
This inequity denies people living with MS and other chronic conditions medically necessary treatment that could vastly improve their quality of life. Click here to e-mail your Representative and ask him/her to cosponsor the Part D Off-label Prescription Parity Act (H.R. 5732) so that this inequity is resolved.
Federal Appropriations Update
Before Congress adjourned for August recess, progress was made on key appropriations bills that determine funding levels for programs, research, and services for people living with MS.
The Senate Labor-Health and Human Service (L-HHS) bill provides a $1 billion increase totaling $32 billion for NIH-the nation's premiere medical research agency that conducts a majority of MS-related research and an increase of nearly $1 billion totaling $12.4 billion for the Social Security Administration. The Senate bill also includes $50 million to create the Cures Acceleration Network (CAN), a program established by the new health care reform law that will help speed the translation and application of discoveries that have shown signs of success at the laboratory level but have not advanced far enough to attract significant investments from the private sector.
The Society continues to advocate for two of its 2010 priority issues- robust funding for the Lifespan Respite program and increased funding for MS research in the Congressionally Directed Medical Research (CDMRP) program. Due to continued work of MS activists, the Senate has provided a substantial increase for the Lifespan Respite program and early indications are positive in terms of funding for MS research in the CDMRP. Please stay tuned for updates as the federal appropriations process continues. MS activists must remain engaged so that these vital programs receive the funding they need.
Senate Votes to Extend Federal Medicaid Assistance to States
The Senate voted to extend federal Medicaid assistance to states for an additional six months-through June 30, 2011. This federal Medicaid assistance was originally enacted as part of the American Recovery and Reinvestment Act of 2009 to help states avoid having to cut vital health services and to help save and create jobs. The federal medical assistance percentage (FMAP) was increased by at least 6.2 percentage points. This increase was to end December 31, 2010-but the recently passed Senate bill H.R. 1586 would phase this assistance down through the first and second quarters of 2011. This legislation still must be passed by the House of Representatives and while the House has already adjourned for August recess, Speaker Nancy Pelosi (CA-8) has announced they will return to Washington next week to cast this important vote.
MS Activists Attend White House 20th Anniversary of the ADA Event
On July 26, five MS activists from around the country were invited to the White House to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, guaranteeing equal opportunity for individuals living with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.
The invited MS activists were able to hear President Obama in his remarks give due credit to the grassroots origin of the historic law and about ongoing efforts to ensure that the ADA realizes its full potential. In conjunction with the anniversary, the Department of Justice issued regulations protecting disability-based discrimination and requiring all new buildings to be compliant with 2010 accessibility standards. President Obama also signed an Executive Order that establishes the federal government as a model employer of individuals living with disabilities-with the goals of better recruitment, training, and retention. To read more and view pictures, click here.
Social Security Disability Benefits Guidebooks Updated
If you have multiple sclerosis (MS) and are unable to work due to an MS-related disability and/or other conditions, you might be entitled to Social Security Disability Insurance (SSDI) benefits or Supplemental Security Income (SSI) benefits. To be eligible for disability benefits, a person must be unable to engage in substantial gainful activity (SGA). Every year, the SGA level is adjusted--typically increased in conjunction with the national average wage index. The Society has updated its online versions of the SSDI Guidebooks for People Living with MS and for Professionals with the 2010 SGA level and with updated information about COBRA and the 24-month wait to Medicare eligibility for persons with disabilities. Please refer to these online, updated versions when necessary.
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
The National MS Society worked closely with Representatives Mary Jo Kilroy (OH-15) and William Thornberry (TX-13), noted clinicians, and other health organizations to draft, name, and introduce legislation that would help people living with MS and other chronic conditions access safe and effective treatment. The Part D Off-label Prescription Parity Act (H.R. 5732) was introduced on July 14 and would allow Medicare Part D carriers to cover the "off-label" use of drugs prescribed to people living with chronic diseases, including MS, when its use is supported by peer-reviewed medical literature. Doctors, based on existing medical literature and their professional judgment, routinely prescribe medications for "off-label" uses, meaning the drugs are used for purposes other than those approved by the Food and Drug Administration (FDA).
Currently, many people on Medicare who live with MS and other chronic conditions are unable to access some safe and effective medications because of inconsistent Medicare policies. Medicare Part D prohibits coverage of drugs for disorders other than those specifically approved by the FDA. However, exceptions are made for those individuals living with cancer and other Medicare programs provide coverage of off label indications. H.R. 5732 would bring parity to Medicare policy and allow people living with MS to access a variety of prescription drugs such as Modafinil (aka Provigil). Modafinil is a drug traditionally used to treat narcolepsy but that has shown significant improvement in relieving fatigue in people living with MS.
This inequity denies people living with MS and other chronic conditions medically necessary treatment that could vastly improve their quality of life. Click here to e-mail your Representative and ask him/her to cosponsor the Part D Off-label Prescription Parity Act (H.R. 5732) so that this inequity is resolved.
Federal Appropriations Update
Before Congress adjourned for August recess, progress was made on key appropriations bills that determine funding levels for programs, research, and services for people living with MS.
The Senate Labor-Health and Human Service (L-HHS) bill provides a $1 billion increase totaling $32 billion for NIH-the nation's premiere medical research agency that conducts a majority of MS-related research and an increase of nearly $1 billion totaling $12.4 billion for the Social Security Administration. The Senate bill also includes $50 million to create the Cures Acceleration Network (CAN), a program established by the new health care reform law that will help speed the translation and application of discoveries that have shown signs of success at the laboratory level but have not advanced far enough to attract significant investments from the private sector.
The Society continues to advocate for two of its 2010 priority issues- robust funding for the Lifespan Respite program and increased funding for MS research in the Congressionally Directed Medical Research (CDMRP) program. Due to continued work of MS activists, the Senate has provided a substantial increase for the Lifespan Respite program and early indications are positive in terms of funding for MS research in the CDMRP. Please stay tuned for updates as the federal appropriations process continues. MS activists must remain engaged so that these vital programs receive the funding they need.
Senate Votes to Extend Federal Medicaid Assistance to States
The Senate voted to extend federal Medicaid assistance to states for an additional six months-through June 30, 2011. This federal Medicaid assistance was originally enacted as part of the American Recovery and Reinvestment Act of 2009 to help states avoid having to cut vital health services and to help save and create jobs. The federal medical assistance percentage (FMAP) was increased by at least 6.2 percentage points. This increase was to end December 31, 2010-but the recently passed Senate bill H.R. 1586 would phase this assistance down through the first and second quarters of 2011. This legislation still must be passed by the House of Representatives and while the House has already adjourned for August recess, Speaker Nancy Pelosi (CA-8) has announced they will return to Washington next week to cast this important vote.
MS Activists Attend White House 20th Anniversary of the ADA Event
On July 26, five MS activists from around the country were invited to the White House to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, guaranteeing equal opportunity for individuals living with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.
The invited MS activists were able to hear President Obama in his remarks give due credit to the grassroots origin of the historic law and about ongoing efforts to ensure that the ADA realizes its full potential. In conjunction with the anniversary, the Department of Justice issued regulations protecting disability-based discrimination and requiring all new buildings to be compliant with 2010 accessibility standards. President Obama also signed an Executive Order that establishes the federal government as a model employer of individuals living with disabilities-with the goals of better recruitment, training, and retention. To read more and view pictures, click here.
Social Security Disability Benefits Guidebooks Updated
If you have multiple sclerosis (MS) and are unable to work due to an MS-related disability and/or other conditions, you might be entitled to Social Security Disability Insurance (SSDI) benefits or Supplemental Security Income (SSI) benefits. To be eligible for disability benefits, a person must be unable to engage in substantial gainful activity (SGA). Every year, the SGA level is adjusted--typically increased in conjunction with the national average wage index. The Society has updated its online versions of the SSDI Guidebooks for People Living with MS and for Professionals with the 2010 SGA level and with updated information about COBRA and the 24-month wait to Medicare eligibility for persons with disabilities. Please refer to these online, updated versions when necessary.
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
Thursday, August 5, 2010
This was posted at an MS support group
This note is not only for myself, but for all my friends and family that have MS and other neurological diseases. The farther I go down this path with this disease, the more frustrating it gets in some ways. I so hope, this reaches at least one person. First of all, yes, most of the time we look just like the rest of the world...normal. For those of us who are blessed, we walk normal, talk normal, dress normal, and react normal just like the rest of the world. At times we may look a little tired, but who doesn't?
Truth is, we are NOT like the rest of the world. There are some crazy things going on inside of our body, that most can't understand, and to different degrees. On most days, I am in excruciating pain. On most days, I am so tired I can't hardly force myself to do just the basic things that need to be done in life. BUT I do, when I can. I'm not whining, if I say I'm tired...it simply means I'm exhausted. If I say I'm hurting, it means it feels like someone's literally trying to rip my body apart, inside out. I don't do things because I don't want to, I don't do things, because on some days I can't. Just like the rest of the people with this disease and others.
Guilt...big issue in our lives. We hate to say no I can't do it, because we don't want to let you down, and it also feels as if we are letting ourselves down. But you know what? We aren't looking for sympathy, sarcasm, and no we aren't making things up to get attention. I, personally, could think of a lot better ways to get attention LOL..some might not be considered legal hahahahaha.
Even tho we are different in so many ways, and have a hard time expressing that to others, there are a lot of ways we are just the same as you. We LOVE to laugh. We like to have fun. We love spending time with those we love. We are still the same people we always were, we are just limited, to some extent on some days.
One thing for sure, we need you now more than ever. Walking off for you might be easy, but it's one of the hardest things we face. Every day we get up and battle a disease as to which, we have no idea what is doing to us from one day to the next. So before you sit back and say what you would do in our shoes, let me say, you have no idea. Point I'm trying to make is this, we are people...we hurt...we love...we cry...we laugh..and most of alll..even tho some parts of our lives have had to change all of them do not.
For those of you we love, we love more. We realize now just how much we have in you. We appreciate the small things so much more, and the larger things, that are irreplaceable, we'd lay down and die for. We love you, we need you, and by alll means , try to understand. You make the difference in our lives everyday. For you heroes who have stuck by us and made us laugh when we didn't feel like even smiling, I admire you. For those of you who have walked out, I suggest you do some research and self searching within who you really are.
For all of you who have MS ....I love you and you are my family. Even tho we are different, I take pride in the different I am. MS has made me a far better person and you, my MS family, are some of the best people I've had the privilege to come to know. We just have to keep praying for a cure, and pushing for understanding.
Monday, August 2, 2010
Fall Walk MS
Walk MS is a simple, but incredibly powerful way
for you to create hope for the future.
Walk MS is our rallying point, a time and a place
for us to stand together and to be together — to
help raise crucial funds that support cutting-edge
research, drive change through advocacy, and
facilitate professional education, while providing
education, support, and services that help people
with MS move their lives forward.
Saturday, September 11 Sunday, September 26
Brewster, MA
Cape Cod Sea Camps Falmouth, MA
Mullen-Hall School
Saturday, September 25
Greenfield, MA
Greenfield High School
The Berkshires, MA
Taconic High School,
Pittsfield
Sturbridge, MA
Sturbridge Town Common
St. Johnsbury, VT
St. Johnsbury School Keene, NH
Wheelock Park
The primary goal of Walk MS is to raise funds to help people who
have MS and their families. All walkers 12 years old and above are
required to turn in at least $25 by Walk Day. If you need help, please
contact walkMSgne@nmss.org or 1-800-344-4867.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
for you to create hope for the future.
Walk MS is our rallying point, a time and a place
for us to stand together and to be together — to
help raise crucial funds that support cutting-edge
research, drive change through advocacy, and
facilitate professional education, while providing
education, support, and services that help people
with MS move their lives forward.
Saturday, September 11 Sunday, September 26
Brewster, MA
Cape Cod Sea Camps Falmouth, MA
Mullen-Hall School
Saturday, September 25
Greenfield, MA
Greenfield High School
The Berkshires, MA
Taconic High School,
Pittsfield
Sturbridge, MA
Sturbridge Town Common
St. Johnsbury, VT
St. Johnsbury School Keene, NH
Wheelock Park
The primary goal of Walk MS is to raise funds to help people who
have MS and their families. All walkers 12 years old and above are
required to turn in at least $25 by Walk Day. If you need help, please
contact walkMSgne@nmss.org or 1-800-344-4867.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Facebook Become a fan of the Greater New England Chapter on Facebook
Call Today to Support Medicaid Assistance
National MS Society, Greater New England Chapter
to me
show details 3:48 PM (40 minutes ago)
Images are not displayed.
Display images below - Always display images from advocacygne@nmss.org
2009ActionAlert_2
We need some help with Senator Brown from MA and both Maine Senators Collins & Snowe.
The Senate early this evening will take an important vote on a bill that would extend federal assistance to state Medicaid programs. An enhanced federal medical assistance percentage (FMAP) was originally included in the Recovery Act to help save jobs and save critical safety net health services. Since the Senate floor schedule is very full, tonight’s vote is seen as the last opportunity to extend the Medicaid assistance. Medicaid assistance currently runs through December 31, 2010; the legislation that will be voted on would extend it and phase it out though June 30, 2011.
It is unclear whether the Senate has the votes right now to pass the bill. Senator Brown’s (MA), Collins’ (ME) and Snowe’s (ME) support is critical. Please make phone calls to these Senators’ offices today. We have provided a toll-free number and talking points below. The vote is tonight, so phone calls must be made today. Thank you for your speedy attention to this matter!
Toll-free Phone Number: (888) 340-6521
Talking Points:
* As a constituent, I urge Senator [Brown (MA) or Collins (ME) or Snowe (ME)] to SUPPORT THE MEDICAID AND EDUCATIONS JOBS AMENDMENT TO H.R. 1586
* Medicaid provides critical health coverage to nearly 50 million Americans including nearly 9 million non-elderly persons living with disabilities. It is our safety net.
* As unemployment rises in the troubled economic times, Medicaid enrollment rises at the same time as state budgets are extremely strained.
* Medicaid fiscal relief included in the Recovery Act prevented harmful budget cuts, saved jobs and protected healthcare coverage of many in need.
* Medicaid assistance to states must continue.
* Please urge Senator [Brown (MA) or Collins (ME) or Snowe (ME)] to SUPPORT THE MEDICAID AND EDUCATIONS JOBS AMENDMENT TO H.R. 1586.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Advocacy Icon Jpg
Early and ongoing treatment with an FDA-approved therapy can ma
to me
show details 3:48 PM (40 minutes ago)
Images are not displayed.
Display images below - Always display images from advocacygne@nmss.org
2009ActionAlert_2
We need some help with Senator Brown from MA and both Maine Senators Collins & Snowe.
The Senate early this evening will take an important vote on a bill that would extend federal assistance to state Medicaid programs. An enhanced federal medical assistance percentage (FMAP) was originally included in the Recovery Act to help save jobs and save critical safety net health services. Since the Senate floor schedule is very full, tonight’s vote is seen as the last opportunity to extend the Medicaid assistance. Medicaid assistance currently runs through December 31, 2010; the legislation that will be voted on would extend it and phase it out though June 30, 2011.
It is unclear whether the Senate has the votes right now to pass the bill. Senator Brown’s (MA), Collins’ (ME) and Snowe’s (ME) support is critical. Please make phone calls to these Senators’ offices today. We have provided a toll-free number and talking points below. The vote is tonight, so phone calls must be made today. Thank you for your speedy attention to this matter!
Toll-free Phone Number: (888) 340-6521
Talking Points:
* As a constituent, I urge Senator [Brown (MA) or Collins (ME) or Snowe (ME)] to SUPPORT THE MEDICAID AND EDUCATIONS JOBS AMENDMENT TO H.R. 1586
* Medicaid provides critical health coverage to nearly 50 million Americans including nearly 9 million non-elderly persons living with disabilities. It is our safety net.
* As unemployment rises in the troubled economic times, Medicaid enrollment rises at the same time as state budgets are extremely strained.
* Medicaid fiscal relief included in the Recovery Act prevented harmful budget cuts, saved jobs and protected healthcare coverage of many in need.
* Medicaid assistance to states must continue.
* Please urge Senator [Brown (MA) or Collins (ME) or Snowe (ME)] to SUPPORT THE MEDICAID AND EDUCATIONS JOBS AMENDMENT TO H.R. 1586.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Advocacy Icon Jpg
Early and ongoing treatment with an FDA-approved therapy can ma
This was posted at an MS support group
This note is not only for myself, but for all my friends and family that have MS and other neurological diseases. The farther I go down this path with this disease, the more frustrating it gets in some ways. I so hope, this reaches at least one person. First of all, yes, most of the time we look just like the rest of the world...normal. For those of us who are blessed, we walk normal, talk normal, dress normal, and react normal just like the rest of the world. At times we may look a little tired, but who doesn't?
Truth is, we are NOT like the rest of the world. There are some crazy things going on inside of our body, that most can't understand, and to different degrees. On most days, I am in excruciating pain. On most days, I am so tired I can't hardly force myself to do just the basic things that need to be done in life. BUT I do, when I can. I'm not whining, if I say I'm tired...it simply means I'm exhausted. If I say I'm hurting, it means it feels like someone's literally trying to rip my body apart, inside out. I don't do things because I don't want to, I don't do things, because on some days I can't. Just like the rest of the people with this disease and others.
Guilt...big issue in our lives. We hate to say no I can't do it, because we don't want to let you down, and it also feels as if we are letting ourselves down. But you know what? We aren't looking for sympathy, sarcasm, and no we aren't making things up to get attention. I, personally, could think of a lot better ways to get attention LOL..some might not be considered legal hahahahaha.
Even tho we are different in so many ways, and have a hard time expressing that to others, there are a lot of ways we are just the same as you. We LOVE to laugh. We like to have fun. We love spending time with those we love. We are still the same people we always were, we are just limited, to some extent on some days.
One thing for sure, we need you now more than ever. Walking off for you might be easy, but it's one of the hardest things we face. Every day we get up and battle a disease as to which, we have no idea what is doing to us from one day to the next. So before you sit back and say what you would do in our shoes, let me say, you have no idea. Point I'm trying to make is this, we are people...we hurt...we love...we cry...we laugh..and most of alll..even tho some parts of our lives have had to change all of them do not.
For those of you we love, we love more. We realize now just how much we have in you. We appreciate the small things so much more, and the larger things, that are irreplaceable, we'd lay down and die for. We love you, we need you, and by alll means , try to understand. You make the difference in our lives everyday. For you heroes who have stuck by us and made us laugh when we didn't feel like even smiling, I admire you. For those of you who have walked out, I suggest you do some research and self searching within who you really are.
For all of you who have MS ....I love you and you are my family. Even tho we are different, I take pride in the different I am. MS has made me a far better person and you, my MS family, are some of the best people I've had the privilege to come to know. We just have to keep praying for a cure, and pushing for understanding.
Truth is, we are NOT like the rest of the world. There are some crazy things going on inside of our body, that most can't understand, and to different degrees. On most days, I am in excruciating pain. On most days, I am so tired I can't hardly force myself to do just the basic things that need to be done in life. BUT I do, when I can. I'm not whining, if I say I'm tired...it simply means I'm exhausted. If I say I'm hurting, it means it feels like someone's literally trying to rip my body apart, inside out. I don't do things because I don't want to, I don't do things, because on some days I can't. Just like the rest of the people with this disease and others.
Guilt...big issue in our lives. We hate to say no I can't do it, because we don't want to let you down, and it also feels as if we are letting ourselves down. But you know what? We aren't looking for sympathy, sarcasm, and no we aren't making things up to get attention. I, personally, could think of a lot better ways to get attention LOL..some might not be considered legal hahahahaha.
Even tho we are different in so many ways, and have a hard time expressing that to others, there are a lot of ways we are just the same as you. We LOVE to laugh. We like to have fun. We love spending time with those we love. We are still the same people we always were, we are just limited, to some extent on some days.
One thing for sure, we need you now more than ever. Walking off for you might be easy, but it's one of the hardest things we face. Every day we get up and battle a disease as to which, we have no idea what is doing to us from one day to the next. So before you sit back and say what you would do in our shoes, let me say, you have no idea. Point I'm trying to make is this, we are people...we hurt...we love...we cry...we laugh..and most of alll..even tho some parts of our lives have had to change all of them do not.
For those of you we love, we love more. We realize now just how much we have in you. We appreciate the small things so much more, and the larger things, that are irreplaceable, we'd lay down and die for. We love you, we need you, and by alll means , try to understand. You make the difference in our lives everyday. For you heroes who have stuck by us and made us laugh when we didn't feel like even smiling, I admire you. For those of you who have walked out, I suggest you do some research and self searching within who you really are.
For all of you who have MS ....I love you and you are my family. Even tho we are different, I take pride in the different I am. MS has made me a far better person and you, my MS family, are some of the best people I've had the privilege to come to know. We just have to keep praying for a cure, and pushing for understanding.
Friday, July 23, 2010
Table of Contents — Summer 2010 Issue
MS Gala 2010, Phyl and Bernie Rubin
MileStones Gala 2010
Features
* Into the Wild
* MS Harborfest
News
* From the President
* MileStones Gala 2010, Honoring Phyl Rubin with the MS Hope Award
* “We Keep Moving” Hits the Road
* World-Wide Survey on Jobs and MS
* Tune In to “MS from A to Z” Online
Newly Diagnosed
* In MS, Relationship Matters
* When the Diagnosis Is Primary Progressive
Programs
* Considering Life Insurance? A Broker Can Help
* The Boston Home B.Fit!
* Program Highlights
o Maine
o Massachusetts
o New Hampshire
o Vermont
* Annual Meeting of Members and Research Update
Living with MS
* 2010 Scholarship Award Recipients
* Physical Wellness
* Relationship Matters
* Everyone Can Join Walk MS and Bike MS
Research
* Research Advocate
* Oral Drugs Make Progress
* Resources to Find Clinical Trials
* Research Updates
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
* MS Activists Make MS a Priority on Capitol Hill in March
Volunteers
* Babson College Students Take on Multiple Sclerosis
Fundraising
* Marathon Strides Against MS
* Ways to Give: Let Us Count the Ways
* Bike MS: Notes
Calendar of Events - see current calendar
MileStones Gala 2010
Features
* Into the Wild
* MS Harborfest
News
* From the President
* MileStones Gala 2010, Honoring Phyl Rubin with the MS Hope Award
* “We Keep Moving” Hits the Road
* World-Wide Survey on Jobs and MS
* Tune In to “MS from A to Z” Online
Newly Diagnosed
* In MS, Relationship Matters
* When the Diagnosis Is Primary Progressive
Programs
* Considering Life Insurance? A Broker Can Help
* The Boston Home B.Fit!
* Program Highlights
o Maine
o Massachusetts
o New Hampshire
o Vermont
* Annual Meeting of Members and Research Update
Living with MS
* 2010 Scholarship Award Recipients
* Physical Wellness
* Relationship Matters
* Everyone Can Join Walk MS and Bike MS
Research
* Research Advocate
* Oral Drugs Make Progress
* Resources to Find Clinical Trials
* Research Updates
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
* MS Activists Make MS a Priority on Capitol Hill in March
Volunteers
* Babson College Students Take on Multiple Sclerosis
Fundraising
* Marathon Strides Against MS
* Ways to Give: Let Us Count the Ways
* Bike MS: Notes
Calendar of Events - see current calendar
Thursday, July 8, 2010
Celebrate the 20th year of the Americans with Disabilities Act !!
ADA Signing
Join the National MS Society’s, Greater New England chapter in partnership with disability activists and policy makers as we celebrate the 20th anniversary of the passage of the Americans with Disabilities Act in Maine, Massachusetts, New Hampshire and Vermont.
Great progress has been made in ensuring equal public access since the ADA passed but continued activism is needed to address remaining barriers.
These exciting free events are scheduled from July 22nd thru 26th, 2010 and all are welcome to attend
Details about each state’s events, along with copies of each official event flyer, can be accessed using the calendar links on our chapter's website.
Please stop by the chapter’s exhibit table at each event. Hope to see you there - invite a friend or two!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Join the National MS Society’s, Greater New England chapter in partnership with disability activists and policy makers as we celebrate the 20th anniversary of the passage of the Americans with Disabilities Act in Maine, Massachusetts, New Hampshire and Vermont.
Great progress has been made in ensuring equal public access since the ADA passed but continued activism is needed to address remaining barriers.
These exciting free events are scheduled from July 22nd thru 26th, 2010 and all are welcome to attend
Details about each state’s events, along with copies of each official event flyer, can be accessed using the calendar links on our chapter's website.
Please stop by the chapter’s exhibit table at each event. Hope to see you there - invite a friend or two!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Friday, July 2, 2010
Federal Focus - July 2010
Take Action!
Support NIH Research and Progress
As the federal budget and appropriations process continues, it is vital for MS activists to advocate for robust funding for the National Institutes of Health (NIH). As the country's premier institution for medical research and the single largest source of biomedical research funding in the world, the NIH's work is tremendously important to people living with MS.
Click here to take action today and urge your U.S. Senators and Representative to support $35 billion for the NIH in Fiscal Year 2011.
Over the past decade, NIH's research has contributed to enhanced knowledge about the mechanics of the immune system, which in turn has led to a better understanding of MS lesions. These NIH discoveries are being used to gain more information about the potential causes of MS and different methods to alter the immune system response to treat MS. Dedicating $35 billion for the NIH in Fiscal Year 2011 would build upon this progress by permitting the NIH to pursue promising scientific and health advances for diseases and chronic conditions including MS. Click here to email your Senators and Representative today.
Temporaray Relief for Medicare Reimbursement Rates
On June 25, President Obama signed into law legislation that delays a 21.3% cut in Medicare reimbursements to physicians and instead provides a 2.2% rate increase for six months, retroactive to June 1. Congress recently considered a longer term solution and also attempted to move this provision as part of a larger package including continued Medicaid assistance to states and extension of COBRA assistance. After repeated attempts at passage, the House and Senate ultimately passed a stand-alone bill that avoids the Medicare reimbursement cut through November 30, 2010.
Many people in the United States depend on Medicare for their health coverage. Currently, the Medicare program covers an estimated 47 million people, including 8 million people with disabilities who are under age 65. Nearly one-quarter of those living with MS rely on Medicare as their primary type of insurance and this temporary fix will help protect access to needed care.
The annual payment cuts are required under a decade-old formula called the sustainable growth rate (SGR). Reimbursement rates for Medicare would have been cut on a yearly basis, but Congress has deferred the cuts nine times since 2003, almost always just days before they would take effect. The National MS Society will continue to monitor and advocate for appropriate Medicare reimbursement as this issue continues.
Health Care Reform Implementation: High Risk Pools and Web Portal Launched
July marks significant milestones in implementation of the new health care reform law, the Patient Protection and Affordable Care Act. July 1 was the official launch of a nation-wide health insurance program for the uninsured. Through temporary high-risk pools, U.S. citizens with a pre-existing health condition who have been living without any health coverage for six months or more will be able to purchase their own health insurance. This coverage will remain in place until broader coverage reforms take effect in 2014. At that point, enrollees in the temporary pools will be transitioned to another plan of their choice.
Thirty states elected to run their own high risk pools, and all aim to begin providing benefits before the fall. The federal government will administer the remaining twenty states' programs, and began accepting applications on July 1st. The Secretary of Health and Human Services (HHS) will maintain oversight over the plans, including determining the minimum benefits that must be included. Although premiums will vary from state to state and according to the applicant's age, plans must cover at least 65% of health care costs.
Information about the temporary high risk pools, other coverage options and additional provisions of the health reform law are now available online. To access this new website designed to promote 'one stop' shopping for consumers, click here. The new web portal is a project of HHS to help individuals and small businesses research and navigate the purchase of affordable health insurance. The web portal will be continuously updated and is scheduled to include detailed information about the pricing of various health plans in October.
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
Support NIH Research and Progress
As the federal budget and appropriations process continues, it is vital for MS activists to advocate for robust funding for the National Institutes of Health (NIH). As the country's premier institution for medical research and the single largest source of biomedical research funding in the world, the NIH's work is tremendously important to people living with MS.
Click here to take action today and urge your U.S. Senators and Representative to support $35 billion for the NIH in Fiscal Year 2011.
Over the past decade, NIH's research has contributed to enhanced knowledge about the mechanics of the immune system, which in turn has led to a better understanding of MS lesions. These NIH discoveries are being used to gain more information about the potential causes of MS and different methods to alter the immune system response to treat MS. Dedicating $35 billion for the NIH in Fiscal Year 2011 would build upon this progress by permitting the NIH to pursue promising scientific and health advances for diseases and chronic conditions including MS. Click here to email your Senators and Representative today.
Temporaray Relief for Medicare Reimbursement Rates
On June 25, President Obama signed into law legislation that delays a 21.3% cut in Medicare reimbursements to physicians and instead provides a 2.2% rate increase for six months, retroactive to June 1. Congress recently considered a longer term solution and also attempted to move this provision as part of a larger package including continued Medicaid assistance to states and extension of COBRA assistance. After repeated attempts at passage, the House and Senate ultimately passed a stand-alone bill that avoids the Medicare reimbursement cut through November 30, 2010.
Many people in the United States depend on Medicare for their health coverage. Currently, the Medicare program covers an estimated 47 million people, including 8 million people with disabilities who are under age 65. Nearly one-quarter of those living with MS rely on Medicare as their primary type of insurance and this temporary fix will help protect access to needed care.
The annual payment cuts are required under a decade-old formula called the sustainable growth rate (SGR). Reimbursement rates for Medicare would have been cut on a yearly basis, but Congress has deferred the cuts nine times since 2003, almost always just days before they would take effect. The National MS Society will continue to monitor and advocate for appropriate Medicare reimbursement as this issue continues.
Health Care Reform Implementation: High Risk Pools and Web Portal Launched
July marks significant milestones in implementation of the new health care reform law, the Patient Protection and Affordable Care Act. July 1 was the official launch of a nation-wide health insurance program for the uninsured. Through temporary high-risk pools, U.S. citizens with a pre-existing health condition who have been living without any health coverage for six months or more will be able to purchase their own health insurance. This coverage will remain in place until broader coverage reforms take effect in 2014. At that point, enrollees in the temporary pools will be transitioned to another plan of their choice.
Thirty states elected to run their own high risk pools, and all aim to begin providing benefits before the fall. The federal government will administer the remaining twenty states' programs, and began accepting applications on July 1st. The Secretary of Health and Human Services (HHS) will maintain oversight over the plans, including determining the minimum benefits that must be included. Although premiums will vary from state to state and according to the applicant's age, plans must cover at least 65% of health care costs.
Information about the temporary high risk pools, other coverage options and additional provisions of the health reform law are now available online. To access this new website designed to promote 'one stop' shopping for consumers, click here. The new web portal is a project of HHS to help individuals and small businesses research and navigate the purchase of affordable health insurance. The web portal will be continuously updated and is scheduled to include detailed information about the pricing of various health plans in October.
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, June 9, 2010
Federal Focus - June 2010
Take Action!
Ask Congress to Extend Assistance for Medicaid and COBRA
The Senate will soon consider the American Jobs and Closing Tax Loopholes Act of 2010 (H.R. 4213), which the House passed just before Memorial Day. With the help of MS Activists, this legislation currently prevents payment cuts for physicians participating in Medicare through 2011. Two vital provisions, however, were stripped out: 1) a six-month extension of state Medicaid fiscal relief; and 2) an extension of COBRA premium assistance to help unemployed workers maintain health insurance. While the Medicaid provision has been restored, both need ardent support to survive the upcoming Senate vote.
Write your Senators today and urge them to support a six-month extension of state Medicaid fiscal relief and an extension of COBRA premium assistance. Both of these provisions are critically important to ensure that people living with MS and other chronic conditions maintain health insurance coverage and the ability to access needed care and therapies. Medicaid fiscal relief is also a proven way to stabilize state budgets and promote economic growth. Take action today and write your Senators!
High Risk Pools Enacted in Health Care Reform to Begin Operations
On or around June 21, 2010, a major and very visible provision of the Patient Protection and Affordable Care Act goes into effect, when temporary high risk pools begin operation. The temporary high risk pools will offer comprehensive health insurance to US citizens and legal residents with a pre-existing condition and who have not had 'creditable' health coverage for the past six months. These will be separate high risk pools from those currently operating in 33 states.
Costs related to qualifying individuals' pre-existing conditions will be covered immediately and at least 65% of all health costs must be covered by the pool. Although out-of-pocket costs will be capped at $5,950 for individuals and $11,900 for families (excluding premiums), exact costs, benefits and other details will not be known until closer to the launch date.
For more information on high risk pools, locate and contact your state department of insurance.
National MS Society Supports Additional Funding for National Institutes of Health
The National MS Society is supporting a request by the research community to increase funding for the National Institutes of Health (NIH) by $35 billion for Fiscal Year (FY) 2011--an 11.9% increase over FY 2010. The NIH is single largest source of biomedical research funding in the world but it has been losing purchasing power over the last few years as its funding has not kept up with medical inflation costs. In addition, the two-year $10.4 billion allotment for NIH funding from the stimulus bill is closing at the end of 2010. As a result, the NIH is facing a drop in funding in FY 2011. In an effort to maintain the level of research at NIH for diseases including MS, the National MS Society is asking Congress to sustain an investment in NIH as they make funding decisions for the following year. Stay tuned for ways that you can help to advocate for additional research funding at NIH!
Ask Congress to Extend Assistance for Medicaid and COBRA
The Senate will soon consider the American Jobs and Closing Tax Loopholes Act of 2010 (H.R. 4213), which the House passed just before Memorial Day. With the help of MS Activists, this legislation currently prevents payment cuts for physicians participating in Medicare through 2011. Two vital provisions, however, were stripped out: 1) a six-month extension of state Medicaid fiscal relief; and 2) an extension of COBRA premium assistance to help unemployed workers maintain health insurance. While the Medicaid provision has been restored, both need ardent support to survive the upcoming Senate vote.
Write your Senators today and urge them to support a six-month extension of state Medicaid fiscal relief and an extension of COBRA premium assistance. Both of these provisions are critically important to ensure that people living with MS and other chronic conditions maintain health insurance coverage and the ability to access needed care and therapies. Medicaid fiscal relief is also a proven way to stabilize state budgets and promote economic growth. Take action today and write your Senators!
High Risk Pools Enacted in Health Care Reform to Begin Operations
On or around June 21, 2010, a major and very visible provision of the Patient Protection and Affordable Care Act goes into effect, when temporary high risk pools begin operation. The temporary high risk pools will offer comprehensive health insurance to US citizens and legal residents with a pre-existing condition and who have not had 'creditable' health coverage for the past six months. These will be separate high risk pools from those currently operating in 33 states.
Costs related to qualifying individuals' pre-existing conditions will be covered immediately and at least 65% of all health costs must be covered by the pool. Although out-of-pocket costs will be capped at $5,950 for individuals and $11,900 for families (excluding premiums), exact costs, benefits and other details will not be known until closer to the launch date.
For more information on high risk pools, locate and contact your state department of insurance.
National MS Society Supports Additional Funding for National Institutes of Health
The National MS Society is supporting a request by the research community to increase funding for the National Institutes of Health (NIH) by $35 billion for Fiscal Year (FY) 2011--an 11.9% increase over FY 2010. The NIH is single largest source of biomedical research funding in the world but it has been losing purchasing power over the last few years as its funding has not kept up with medical inflation costs. In addition, the two-year $10.4 billion allotment for NIH funding from the stimulus bill is closing at the end of 2010. As a result, the NIH is facing a drop in funding in FY 2011. In an effort to maintain the level of research at NIH for diseases including MS, the National MS Society is asking Congress to sustain an investment in NIH as they make funding decisions for the following year. Stay tuned for ways that you can help to advocate for additional research funding at NIH!
Friday, June 4, 2010
Help Restore State Medicaid Relief
Take Action!
MS activists have been successful in helping to prevent a devastating cut to physicians participating in Medicare through 2011. Legislation currently being considered in Congress fortunately prevents this cut, but another vital provision must be restored. Call your U.S. Senators today and urge them to restore a six-month extension of increased federal Medicaid assistance to states. Enter your zip code and you will be provided talking points. Use the toll-free number 1-888-340-6521 to be connected with your U.S. Senators.
Medicaid provides health and long-term care coverage to more than 59 million Americans, including many people living with disabilities. With the rise in unemployment during troubled economic times, more Americans rely on Medicaid to help cover their health care costs. At the same time of enrollment growth, state budget pressures swell as revenues decline.
To help avoid drastic cuts to health services, the American Recovery and Reinvestment Act passed by Congress in 2009 provided significant federal assistance to state-run Medicaid programs. This fiscal relief prevented harmful budget cuts, saved jobs and protected the healthcare coverage of those in need. The economic situation remains dire, however, and since states are currently planning their FY 2011 budgets, Congress must take immediate action to extend federal Medicaid assistance.
There is great support for extending federal Medicaid assistance. In March, the Senate passed a six-month extension of the Recovery Act's enhanced federal Medicaid match. The House just passed a similar bill, but the Medicaid provision was removed. It is up to the Senate to quickly correct this omission.
Call your U.S. Senators today and urge them to immediately restore and pass the six-month extension of the increased federal Medicaid assistance. Use the toll-free number 1-888-340-6521 to be connected with your U.S. Senators. When you are connected with your Senator's office, tell the office:
* As your constituent, I urge the Senator to restore and pass a six-month extension of the increased federal Medicaid assistance.
* Medicaid provides health benefits to those hardest hit by the recession. As unemployment rises in the troubled economic times, Medicaid enrollment rises at the same time as state budgets are extremely strained.
* Medicaid fiscal relief included in the Recovery Act prevented harmful budget cuts, saved jobs and protected healthcare coverage of many in need.
* Medicaid assistance to states must continue. Restoring Medicaid funding for states is good for the Medicaid program, the health of state budgets, and the national deficit.
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
MS activists have been successful in helping to prevent a devastating cut to physicians participating in Medicare through 2011. Legislation currently being considered in Congress fortunately prevents this cut, but another vital provision must be restored. Call your U.S. Senators today and urge them to restore a six-month extension of increased federal Medicaid assistance to states. Enter your zip code and you will be provided talking points. Use the toll-free number 1-888-340-6521 to be connected with your U.S. Senators.
Medicaid provides health and long-term care coverage to more than 59 million Americans, including many people living with disabilities. With the rise in unemployment during troubled economic times, more Americans rely on Medicaid to help cover their health care costs. At the same time of enrollment growth, state budget pressures swell as revenues decline.
To help avoid drastic cuts to health services, the American Recovery and Reinvestment Act passed by Congress in 2009 provided significant federal assistance to state-run Medicaid programs. This fiscal relief prevented harmful budget cuts, saved jobs and protected the healthcare coverage of those in need. The economic situation remains dire, however, and since states are currently planning their FY 2011 budgets, Congress must take immediate action to extend federal Medicaid assistance.
There is great support for extending federal Medicaid assistance. In March, the Senate passed a six-month extension of the Recovery Act's enhanced federal Medicaid match. The House just passed a similar bill, but the Medicaid provision was removed. It is up to the Senate to quickly correct this omission.
Call your U.S. Senators today and urge them to immediately restore and pass the six-month extension of the increased federal Medicaid assistance. Use the toll-free number 1-888-340-6521 to be connected with your U.S. Senators. When you are connected with your Senator's office, tell the office:
* As your constituent, I urge the Senator to restore and pass a six-month extension of the increased federal Medicaid assistance.
* Medicaid provides health benefits to those hardest hit by the recession. As unemployment rises in the troubled economic times, Medicaid enrollment rises at the same time as state budgets are extremely strained.
* Medicaid fiscal relief included in the Recovery Act prevented harmful budget cuts, saved jobs and protected healthcare coverage of many in need.
* Medicaid assistance to states must continue. Restoring Medicaid funding for states is good for the Medicaid program, the health of state budgets, and the national deficit.
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
Thursday, May 27, 2010
National MS Society
The National MS Society, Greater New England Chapter
presents
The African - American Experience with Multiple Sclerosis
A Day of Education & Family Activities
When: Saturday, June 5
Time: 10 a.m. - 2 p.m.
Where: Charles Street AME Church
551 Warren Street
Roxbury, MA 02121
FREE. Pre-registration is required. Lunch and activities provided.
Family members of all ages invited to attend. Limit 4 guests per registration.
African-Americans develop MS at half the rate of white Americans - one in 1,500 people, rather than one in 750. Evidence suggests that MS does not treat everyone equally and some recent studies seem to indicate that MS may take a more progressive course in African-Americans. Explore how MS affects the African-American community through informal discussions and activities for the entire family. Presentations include fatigue management, keeping cool, and staying active and healthy!
Meet other African-Americans with MS and empower yourself and your family to live well everyday with MS!
Register online now or call 1-800-344-4867! We hope to see you there!
The Invisible Symptoms of MS: Cognition, Pain & Fatigue
When: Saturday, June 5
Time: 9 a.m. - 3:30 p.m.
Where: The Shaw’s Center
1 Lexington Ave
Brockton, MA 02301
FREE. Pre-registration is required by June 1st. Continental breakfast and lunch provided.
Adult Family & friends are welcome. Limit 2 additional guests per registrant.
Dealing with the many symptoms of MS can be very difficult, but coping with the invisible symptoms, cognitive difficulties, pain, and fatigue, can create additional challenges such as:
* Why am I forgetting things? Why can’t I remember the word I want to say?”
Cognitive difficulties can be frustrating for both the person experiencing it and also for family members. Learn to understand and deal with this troubling symptom. Speaker: William Goodman, PsyD; Neurological Consultants, Bennington, VT
* But you look so well, are you really that tired?”
Fatigue is the #1 symptom reported by people with MS, getting others to understand this invisible symptom can be both frustrating and tiring! Speaker: Christine St. Laurent, RN, MSCN; former nurse coordinator at the MS Center at Sturdy Memorial Hospital, Attleboro, MA
* What is causing the pain I’m experiencing? Does MS cause pain? Is there any treatment for my pain?”
Pain is an invisible symptom, but a very real concern for many people with MS. Learn about the different types of pain, the causes, and treatments available. Speaker: Jay Rosenfeld, MD; Rehabilitation Hospital of the Cape & Islands, Sandwich, MA
This free day long conference addresses these questions & concerns while also providing an opportunity for peer networking for people with MS, adult family members and caregivers. Breakout sessions on “Coping with MS” for persons with MS and “Caregiver Concerns” for caregivers and family members will be held.
Register online now or call 1-800-344-4867!
Massachusetts Dept. of Conservation & Recreation Accessible Recreation Fair
When: Saturday, June 5
Time: 10 a.m. - 3 p.m.
Where: Artesani Park
Brighton, MA
The Department of Conservation and Recreation’s (DCR) Universal Access Program (UAP) will offer a free fun-filled day of celebrating Accessible Outdoor Recreation available for individuals, families and friends of people with disabilities. Activities will include a cycling fair with an assortment of accessible cycles available for use; adaptive recreational activities, including hiking, park quest, letterboxing, face painting, interpretive programs; a D.J.; snacks and more! Join DCR rain or shine and enjoy the accessible recreation fair, cool off in the spray pool and use the playground located in park as well. Enjoy the camaraderie while learning about DCR’s inclusive, accessible programs and resources available to people of all abilities around the state. This is THE PLACE to come FIND OUT ABOUT accessible recreation programs offered by multiple organizations in the Boston area and beyond. Pre-registration is highly recommended, especially for use of equipment. To register, call Gigi at 617-626-1294 or Marcy at 413-545-5758
* The Greater New England Chapter of the National Multiple Sclerosis Society is informing you of this opportunity as a service to our members. We neither review nor certify the content of independent programs. It is our policy to maintain the confidentiality of our mailing lists. If you choose to participate in this program, you will be registering with the Massachusetts Dept. of Conservation & Recreation.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
MS stops people from moving. The National MS Society exists to make sure it doesn’t. We are a collective of passionate individuals, moving together to create a world free of MS. JOIN THE MOVEMENT
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 www.nationalmssociety.org or 1-800-344-4867.
National Multiple Sclerosis Society | 733 Third Avenue | New York, NY | 10017
presents
The African - American Experience with Multiple Sclerosis
A Day of Education & Family Activities
When: Saturday, June 5
Time: 10 a.m. - 2 p.m.
Where: Charles Street AME Church
551 Warren Street
Roxbury, MA 02121
FREE. Pre-registration is required. Lunch and activities provided.
Family members of all ages invited to attend. Limit 4 guests per registration.
African-Americans develop MS at half the rate of white Americans - one in 1,500 people, rather than one in 750. Evidence suggests that MS does not treat everyone equally and some recent studies seem to indicate that MS may take a more progressive course in African-Americans. Explore how MS affects the African-American community through informal discussions and activities for the entire family. Presentations include fatigue management, keeping cool, and staying active and healthy!
Meet other African-Americans with MS and empower yourself and your family to live well everyday with MS!
Register online now or call 1-800-344-4867! We hope to see you there!
The Invisible Symptoms of MS: Cognition, Pain & Fatigue
When: Saturday, June 5
Time: 9 a.m. - 3:30 p.m.
Where: The Shaw’s Center
1 Lexington Ave
Brockton, MA 02301
FREE. Pre-registration is required by June 1st. Continental breakfast and lunch provided.
Adult Family & friends are welcome. Limit 2 additional guests per registrant.
Dealing with the many symptoms of MS can be very difficult, but coping with the invisible symptoms, cognitive difficulties, pain, and fatigue, can create additional challenges such as:
* Why am I forgetting things? Why can’t I remember the word I want to say?”
Cognitive difficulties can be frustrating for both the person experiencing it and also for family members. Learn to understand and deal with this troubling symptom. Speaker: William Goodman, PsyD; Neurological Consultants, Bennington, VT
* But you look so well, are you really that tired?”
Fatigue is the #1 symptom reported by people with MS, getting others to understand this invisible symptom can be both frustrating and tiring! Speaker: Christine St. Laurent, RN, MSCN; former nurse coordinator at the MS Center at Sturdy Memorial Hospital, Attleboro, MA
* What is causing the pain I’m experiencing? Does MS cause pain? Is there any treatment for my pain?”
Pain is an invisible symptom, but a very real concern for many people with MS. Learn about the different types of pain, the causes, and treatments available. Speaker: Jay Rosenfeld, MD; Rehabilitation Hospital of the Cape & Islands, Sandwich, MA
This free day long conference addresses these questions & concerns while also providing an opportunity for peer networking for people with MS, adult family members and caregivers. Breakout sessions on “Coping with MS” for persons with MS and “Caregiver Concerns” for caregivers and family members will be held.
Register online now or call 1-800-344-4867!
Massachusetts Dept. of Conservation & Recreation Accessible Recreation Fair
When: Saturday, June 5
Time: 10 a.m. - 3 p.m.
Where: Artesani Park
Brighton, MA
The Department of Conservation and Recreation’s (DCR) Universal Access Program (UAP) will offer a free fun-filled day of celebrating Accessible Outdoor Recreation available for individuals, families and friends of people with disabilities. Activities will include a cycling fair with an assortment of accessible cycles available for use; adaptive recreational activities, including hiking, park quest, letterboxing, face painting, interpretive programs; a D.J.; snacks and more! Join DCR rain or shine and enjoy the accessible recreation fair, cool off in the spray pool and use the playground located in park as well. Enjoy the camaraderie while learning about DCR’s inclusive, accessible programs and resources available to people of all abilities around the state. This is THE PLACE to come FIND OUT ABOUT accessible recreation programs offered by multiple organizations in the Boston area and beyond. Pre-registration is highly recommended, especially for use of equipment. To register, call Gigi at 617-626-1294 or Marcy at 413-545-5758
* The Greater New England Chapter of the National Multiple Sclerosis Society is informing you of this opportunity as a service to our members. We neither review nor certify the content of independent programs. It is our policy to maintain the confidentiality of our mailing lists. If you choose to participate in this program, you will be registering with the Massachusetts Dept. of Conservation & Recreation.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
MS stops people from moving. The National MS Society exists to make sure it doesn’t. We are a collective of passionate individuals, moving together to create a world free of MS. JOIN THE MOVEMENT
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 www.nationalmssociety.org or 1-800-344-4867.
National Multiple Sclerosis Society | 733 Third Avenue | New York, NY | 10017
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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.