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
Thursday, September 30, 2010
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
Subscribe to:
Posts (Atom)
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.