National MS Society, Greater New England Chapter National MS Society

Dear Friend,

About two weeks ago, you were sent an invite to participate in a research study about Health Beliefs and Physical Activity in People with MS. If you have already completed the survey, thank you! If not, please take some time to do so now.

This research study will assess your beliefs about exercise and your plans to be physically active. You are being asked to participate in the survey because you are an adult with multiple sclerosis. The information gained through this research will guide physical activity practitioners in developing effective strategies to encourage individuals with MS to exercise.

You will be asked to complete a set of surveys two times, 4 month apart. The completion of the on-line surveys should take you about 20 to 30 minutes each time. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.

Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. Any questions concerning the research or your participation should be directed to Susan L. Kasser, Ph.D. Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405, (802) 656-7742 or Susan.Kasser@uvm.edu.

Questions concerning your rights as a participant in this research can be directed to Nancy Stalnaker, Administrator of the Institutional Review Board at the University of Vermont at (802) 656-5040.

Your decision to participate is sincerely appreciated.
Please connect to this link to take the Health Beliefs Survey. Thank you!
http://www.uvm.edu/~mshealth


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

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! For more information or to register, click here or call 1-800-344-4867! We hope to see you there!

African Americans with MS

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

MSConnection Spring 2010

Table of Contents — Spring 2010 Issue
Features

* MS Awareness
* Tax Time 2010
* Serving on a Commission in My City: Citizenship Can Be Fun
* Interested in Contributing to Your Own Community?

News

* From the President
* Tom Kuhn to Lead the Society’s National Board
* Health Care Reform: Where Legislation Stands Today

Newly Diagnosed

* New to MS? NARCOMS Needs You

Programs

* Home LINKS
* Peer Support - Someone to Listen
* Program Highlights
o Massachusetts
o Vermont

Living with MS

* D-eficient?
* Oral Meds for MS Are Coming

Research

* Research Advocate: Ampyra Approved by FDA to Improve Walking for People with MS
* Understanding “Benign MS”
* Research Updates
* Resources to Find Clinical Trials

Advocacy

* Federal Updates
* State Updates
o Vermont
o Massachusetts
o New Hampshire

Volunteers

* King Philip Regional High School Students
* Diane Hall: Volunteer Highlight

Fundraising

* Congratulations Mission Possible 2009!
* Bike MS Champions
* Donate Today!
* 2010 Fundraising Events

Calendar of Events - see current calendar

Classified Ads - see current listings

Programs Catalog - see upcoming programs list

MS Auto Rally

June 19, 2010 ~ Concord-Carlisle High School in Concord, Mass.

Take a Road-Trip to the Cure!

Raise money to help people with multiple sclerosis.

MS Auto Rally

Drive the
open road

Out-think
the competition

Discover
hidden history

An exciting road game of strategy and discovery.
Explore the historic byways of Massachusetts.

* Teams of family and friends compete in a fun and clever scavenger hunt.

* Driving their favorite automobile, teams try to out-smart each other to gather the most items.

* The MS Auto Rally challenges you with thought-provoking questions as you navigate along scenic back roads and steer by cultural and historic landmarks.



* Each car is a team and we encourage you to reach a fundraising goal of $1,000. The fundraising minimum for each team is $500.

* Time is a factor, but the MS Auto Rally is not a race.

* Help people with MS without breaking a sweat!

* Take a Road-Trip with a purpose, drive for dollars to create a world free of MS.

Register online today 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

Join Us. Act Now!

presented by the
National Multiple Sclerosis Society
Date: May 5, 2010, 10:00 am - 1:30 pm
Location: The Great Hall, Massachusetts State House, Beacon Hill, Boston, MA
Registration: Advance registration is required. Register online now or by calling the MS Action Day hotline: 1-800-344-4867 ext 191.
In these trying economic times, our collective voices on issues that benefit people with MS and their families are needed more than ever. State funding for Home LINKS has been cut and future funding is in jeopardy. If you have never attended this annual event, make a commitment to join others with MS, their families, and health care professionals from around the state to advocate for our two highest priority issues this year:
• Funding for Home LINKS, the Chapter’s care management program
• A spousal waiver to increase Medicaid eligibility for severely disabled adults by excluding spousal income
Register early! Advance registration required
Confirmation is sent following registration. You will receive information prior to MS Action Day. Participation in a pre-event conference call to prepare you for your visit is strongly urged. This year you will meet with your Senator and representatives. Bring a friend or two!
Register online now!

Speakers:
• Dr. Jean McGuire, Assistant Secretary for Disability Policies & Programs
• Senator Mark Montigny, Second Bristol and Plymouth
• Representative Mary Grant, Sixth Essex
• Joann D'Amico Stone, Person with MS, Advocate, Volunteer Leader
• Home LINKS Client to be announced

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

Take action -- Become an MS Activist!

Participate in a Health Physical Activity Survey for people with MS

National MS Society


Dear Friend,

You are being invited to participate in a research study conducted by the University of Vermont to assess your beliefs about exercise and your plans to be physically active. You are being asked to participate in the survey because you are an adult with multiple sclerosis. The information gained through this research will guide physical activity practitioners in developing effective strategies to encourage individuals with MS to exercise.

You will be asked to complete a set of surveys two times, 4 months apart. The completion of the on-line surveys should take you about 20 to 30 minutes each time. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.

Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. Any questions concerning the research or your participation should be directed to Susan L. Kasser, Ph.D. Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405, (802) 656-7742 or Susan.Kasser@uvm.edu.

Questions concerning your rights as a participant in this research can be directed to Nancy Stalnaker, Administrator of the Institutional Review Board at the University of Vermont at (802) 656-5040.

Your decision to participate is sincerely appreciated.
Please connect to this link to take the Health Beliefs Survey. Thank you!
http://www.uvm.edu/~mshealth


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

Federal Focus-April 2010

Call-In to Help Limit Cost Sharing and Out-of-Pocket Prescription Drug Costs
Today, Tuesday April 13, the National MS Society, in collaboration with other patient advocacy organizations, is hosting a national call-in day to urge Members of Congress to address the increasing costs of prescription drugs. Call your Representative today and ask him/her to cosponsor the Affordable Access to Prescription Medications Act of 2009 (H.R. 3799). You can also reinforce your message by sending an email to your Representative's office today!

People living with multiple sclerosis could save thousands of dollars a year on their disease modifying therapies through this reform. H.R. 3799 would cap monthly out-of-pocket costs for prescription drugs at $200 per prescription, or $500 per month for those taking more than one medication. All public and private insurance plans, including Medicare Part D prescription drug plans, would be addressed in this legislation. Take action by calling and sending an email to your Representative today!

MS Activists Make CDMRP Campaign a Success
Thanks to the help of MS Activists, our Congressionally Directed Medical Research Programs (CDMRP) campaign this Spring was extremely successful. The program received 97 bi-partisan sponsors in the House and 24 bi-partisan sponsors in the Senate. This represents nearly a 20% increase in support on Capitol Hill this year! This outcome would not have been possible without the dedication and help of MS Activists. To see a list of all the Members who have signed the CDMRP Dear Colleague please visit the MS Activist blog and be sure to send a thank you to your Members who signed on if you have not already.

New Housing Program Announced to Help People with Disabilities
Last week, Health and Human Services (HHS) Secretary Kathleen Sebelius and Housing and Urban Development (HUD) Secretary Shaun Donovan announced a housing program to help those living with disabilities. As part of the Year of Community Living Initiative, HHS and HUD collaborated to provide housing assistance for non-elderly persons with disabilities to live independent and productive lives in their communities, rather than in institutional settings. HUD is offering approximately $40 million to public housing authorities across the country to fund approximately 5,300 Housing Choice Vouchers for non-elderly persons with disabilities, allowing them to live independently. To read the full funding announcement and learn more about how your state housing authority can leverage this funding visit the HUD website.

Health Care Reform Bills Signed Into Law
On March 30, President Obama signed the Reconciliation Act of 2010 (H.R. 4872), the second piece of the health care reform legislation approved by Congress. The bill makes changes sought by the President and House of Representatives to the Senate health care reform bill (H.R. 3590) signed by the President March 23. These two bills include numerous provisions affecting health care coverage, the health care delivery system, and sources of revenue for the financing of reform. Together, H.R. 3590 and H.R. 4872, will help many people living with MS by extending health coverage to 32 million people, prohibiting discrimination on pre-existing conditions, limiting out-of-pocket costs, and removing lifetime caps on benefits. Some of these provisions will go into effect immediately, while some will be implemented over the next decade.

As provisions of health reform begin to be implemented, the Society will be continue to provide up to date analysis and information on the Government Affairs section of our website. Our most recently added resource is an implementation timeline that the Kaiser Family Foundation has produced. We encourage you to visit this site often.



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

Affordable Access National Call-In Day

Take Action!
Help Limit Cost Sharing and Out-of-Pocket Prescription Drug Costs

On Tuesday April 13, the National MS Society, in a collaborative effort with other patient advocacy organizations, is hosting a national call-in day to urge Members of Congress to address the increasing costs of prescription drugs. Call your Representative on Tuesday, April 13 and ask him/her to cosponsor the Affordable Access to Prescription Medications Act of 2009 (H.R. 3799). Enter your zip code and you will be provided talking points. Use the toll-free number 866-339-6321 to be used to be connected with your U.S. Representative.

Prescription medications to help manage MS can exceed $30,000 per year or more than $800 per month out-of-pocket. A recent study showed that 20% of people living with MS did not re-fill their prescription when the portion of the cost-sharing reached $250 per month.

Representative Hank Johnson (GA-4th) introduced H.R. 3799 to provide much needed relief to those living with MS and other chronic conditions that constantly struggle with the financial burden of paying for medication needed to maintain their health, well-being and independence. Call your Representative on Tuesday, April 13. Enter your zip code and talking points will be provided. Use the toll-free number 866-339-6321 to be connected to your U.S. Representative.

The National MS Society and MS LEARN ONLINE present... MS and Your Emotions Part One

The National MS Society and
MS LEARN ONLINE present...
MS and Your Emotions Part One



A new Feature Presentation:

MS and Your Emotions Part One


Part one of a two-part video webcast series that explores:
• The "why me?" question
• Living with the uncertainty of MS
• My self-esteem

Click here to view the webcasts, or copy into your browser: http://www.nationalmssociety.org/multimedia-library/webcasts--podcasts/ms-and-your-emotions/index.aspx


If you have a pop-up blocker, you will need to disable it prior to participating in a MS Learn Online webcast.
Daily Minute

Have you seen this week's Daily Minutes? Click here and go to the green box to see short clips discussing:

• Going to the doctor with primary-progressive MS
• Newly diagnosed
• MS - a family adjustment
• What is MS?
Q&A
This week's Q&A is about the sensory symptom sometimes referred to as corticosteroids. Click here and go to the blue box.

E-mail your question to mslearnonline@nmss.org.

Increased Support for Respite Care Services

Take Action!

We achieved substantial support for respite care services in the U.S. House of Representatives. Now, MS activists turn our focus on the Senate.

The Lifespan Respite Care Act's enactment in 2006 represented a major step forward in recognizing the importance of and addressing the needs of family caregivers. While the law offers a great opportunity, since its creation, it has been severely underfunded. Contact your Senators today and urge them to support full funding for Lifespan Respite in FY 2011.

Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease and often, a family member steps into this caregiver role. Approximately 50 million family caregivers in the nation are responsible for 80% of long-term care. The value of uncompensated family care giving services keeps growing and is currently estimated at $375 billion a year. The Lifespan Respite Care Act supports much needed short-term care that helps these individual or family caregivers take a break from the daily routine and stress of providing care.

The Act authorized funding beginning in FY 2007, but did not receive an appropriation until FY 2009 and was significantly underfunded at $2.5 million in both FY 2009 and FY 2010. Write your Senators today and urge them to support full funding for Lifespan Respite in FY 2011.

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