J.K. Rowling gives $15.4 million to MS research

‘Harry Potter’ author’s mom died of complications related to disease

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

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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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

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.

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

Call Today to Support Medicaid Assistance

National MS Society, Greater New England Chapter
to me

show details 3:48 PM (40 minutes ago)

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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.