Federal Focus - December 2012

Activist Read the MS Activist Blog Chapter Contacts for State Issues Issues Briefs and Background National MS Society Homepage Take Action on Important End-of-the-Year Policies Before heading home for the holidays, Congress has several important items to tackle and complete before early next year. Two of these are particularly vital to the MS community and we urge you to take action and email your members of Congress about them today. One important must-do for Congress is to extend an exceptions process so that Medicare beneficiaries can continue to have access to therapy services. In an effort to save money, Congress passed legislation in 1997 capping the outpatient physical, speech, and occupational therapy services to which Medicare beneficiaries are eligible each calendar year. Because this placed an undue burden on many individuals with MS and other diseases whose annual costs for these services exceed the cap, Congress has consistently acted in a bipartisan manner to extend an exceptions process whereby beneficiaries can ask for services necessary to keep them healthy and functional to be covered. If Congress doesn’t act on this before the end of the year, the exceptions process will go away and access to therapy services will be threatened. Another significant focus of Congress is how to reduce the federal deficit. Across-the-board cuts are slated to take effect in January 2013, but Congress and the Administration are looking at alternatives to avoid that approach. This could take several forms, but regardless could have serious implications for MS research funding and programs important to people with MS, including Medicare and Medicaid. Changes are necessary, but as Congress considers options for deficit reduction, it is important to educate them about the federal programs that directly impact our community. Be sure to take action today—by clicking here, you can email your members of Congress and urge them to consider our priorities before the end of the year: extend the exceptions process for therapy and protect MS research funding, Medicare and Medicaid. Happy Holidays The National MS Society wishes each and every one of you a very happy holiday season. We continue to face economic challenges in our country and occasional opposition but despite these obstacles, MS Activists remain strong and true to our mission of ending MS forever. In 2012 alone, MS Activists sent over 25,000 email messages to Congress urging support of various policies important to our community and we were heard. Progress would not be possible without the dedication and tenacity of MS Activists. Happy holidays and we look forward to another great year in 2013.

Rights Treaty Fails in the Senate, but Progress was Made

You may have heard by now that on Tuesday, the United States Senate took the vote on whether to ratify the U.N. Convention on the Rights of Persons with Disabilities (CRPD). It needed a two thirds majority for ratification and fell short, garnering 61 votes in favor to 38 opposed. (For a list of how all Senators voted, click here, and feel free to send thanks to those who supported the treaty). This was a rare opportunity for American MS Activists to push expansion of civil rights for persons with disabilities on an international scale and while not yet successful, your efforts were very impressive and you should be proud of the progress that was made. Over a series of months, MS Activists sent over 10,000 messages to U.S. Senators. Because of the tremendous effort of you and our coalition partners, the Senate Foreign Relations Committee held a hearing on the CRPD and voted it out of Committee. You also helped garner support from key political champions of the disability community including war heroes like Sen. John McCain and former Senate Majority Leader Bob Dole as well as President George H. W. Bush. Unfortunately the opposition created arguments against the treaty that simply aren’t accurate, suggesting that the United Nations would interfere with how we educate and raise children with disabilities. Some Senators took the position that by ratifying the treaty, it would give ‘cover’ to our enemies that have signed the treaty. This opposition clouded what was most important--declaring and reaffirming the rights of Americans with disabilities in the international realm. The United States became the worldwide leader in the disability rights the moment President Bush signed the Americans with Disabilities Act (ADA) over 22 years ago and the nations that have already ratified this treaty are now, a generation later, moving forward with disability rights by declaring that they too embrace what is embodied in the ADA. To date, 125 countries and the European Union have approved the treaty. While the result of the Senate vote is extremely disappointing, this isn’t the end. In January, a new Senate will be sworn in and Senate Majority Leader Harry Reid has already indicated that he intends to bring the CRPD back for another vote sometime in the next two years. We will continue to work on this important issue so that the rights of Americans with disabilities are rightly recognized internationally. In the meantime, be proud of the work you have done and be ready to take action when the opportunity arises.

This is it: Historical Vote on Important Rights Treaty

This is it! Yesterday, Senate Majority Leader Reid brought the Convention on the Rights of Persons with Disabilities (CRPD) to the Senate floor. The first vote—a motion to proceed with the debate—occurred yesterday and passed with a bipartisan vote! Today, the Senators will be on the Senate floor to continue the debate. This is now the FINAL PUSH. It’s because of your efforts that we are on the verge of a ratification vote! Over the past year, many of you responded to action alerts urging you to contact your Senators to support the CRPD. Together you sent over 7,500 messages urging ratification of this treaty that will advance disability rights around the world. This is remarkable and we thank you for your help! We need everyone to take action, even if you’ve already contacted your Senators. Now that the treaty has been brought to the Senate floor, your Senators need to hear once again that you support the treaty with no additional amendments and that this treaty is important to you. Please click here to email your Senators and ask them to commit to vote yes on the CRPD with no new amendments! We need your help to urge your Senators to join the group of bipartisan champions and support the disability community. Thank you, once again, for your help!

MSConnection Winter 2012

Table of Contents — Winter 2012 Issue MSConnection cover thumbnail Top Stories From the President Making Connections: Annual Meeting of Members Conference & EXPO with Stanley F. Waterman Research Series News Once-daily MS Pill Hit the Market in October National MS Society’s Volunteer Hall of Fame Living with MS With a Little Support Seeking Self-Help Group Leaders Commit to Eat Well Family Connections Programs 2013 Employment Teleconference Series MS Scholarships Great Activities Planned For MS Awareness Week! Recent Addition to the Dora Lipcon Lending Library Day of Service Teleconference: The Spectrum of MS Help is a Call Away Wellness Scholarship Program Keep S'myelin In Touch Phone Groups Self-Help Groups MS Learn Online Home LINKS Money Matters Handling a High-Deductible Plan Ask the Employment Specialist: Telephone Q&A Session Research Ginkgo Fails to Improve Cognitive Function in People with MS Research Advocate Understanding Clinical Trials Society Collaborates with International Partners to Speed Progressive MS Research Investigators Recruiting for Personalized T Cell Immunotherapy Study in Secondary-Progressive MS Advocacy Federal Massachusetts Vermont Next Legislative Session MS Action Alert Network Volunteer Updates MS Activist Blog Government Relations Committee Health Care Reform Implementation Improved Access to Health Care in Rural Areas Wanted: MS Grass Tops! Volunteers Volunteer Engagement at Greater New England Chapter Computer Outreach Program Technical Support Volunteers Needed Fundraising Recent Event Re-caps: Dinner of Champions Vermont, MS Challenge Walk, Bike & Hike the Berkshires, New Balance Falmouth Road Race, Link Up for MS, Fall Walks, MS Harborfest, Fashion Plates Giving Has Never Been Easier Community Fundraising Events Special Thanks Upcoming Events Calendar of Events - see current calendar Classified Ads - see current listings

Tell Congress: We Need Cures, Not Cuts.

Congress is considering major changes in federal policy in order to reduce the deficit, including “sequestration,” which means arbitrary, across-the-board budget cuts to defense and non-defense spending. Sequestration would dramatically reduce funding for medical research and public health functions. If Congress enacts these cuts without considering the impact on medical research and public health, our community will lose resources dedicated to finding a cure for MS! We can’t let that happen. Join thousands of research advocates on Wednesday, November 14 in telling Congress we need cures, not cuts! Click here for: Your Members' contact information Information on who to speak to in the office Talking points to use when calling your Members' offices The call will only take a couple of minutes! Help us make this day a success and ask your friends and family to join us in telling Congress we need cures, not cuts!

Upcoming Program: Ask the Employment Specialist

Ask the Employment Specialist: Telephone Q&A Session Do you have a question about employment issues you would like answered? Are you curious about workplace disclosure, social security benefits, the need for a reasonable accommodation or are you thinking about returning to work? Employment specialist Barbara McKeon, CRC, LMHC, Director of Employment Programs at the New York City - Southern New York Chapter chapter, will be available to address your questions regarding employment concerns that are important for people living with MS. Wednesday, November 14, 2012 12 – 1 p.m. (Registration deadline November 12) Wednesday, February 13, 2013 12- 1p.m. Wednesday, May 8, 2013 12- 1p.m. Wednesday, August 14, 2013 12- 1p.m. Register online

Federal Focus - November 2012

Support after Hurricane Sandy The National MS Society sends our thoughts and support to those who have been impacted by Hurricane Sandy. If you are a person with MS or have a loved one with MS who has been displaced or is in need, we urge you to contact the Society’s Information Resource Center (IRC) at 1-800-344-4867, option 1 or through the IRC mailbox of generalmailbox@nmss.org. Highly trained IRC staff are fully apprised of any remaining Society office closures and can connect individuals to financial resources for temporary living assistance, medications and other emergent needs. We wish everyone a safe and speedy recovery. Election 2012 Resources On November 6, 2012, Americans will cast votes for the presidency, every member of the U.S. House of Representatives and one-third of the U.S. Senate. One out of every five Americans lives with a disability and their voices will be critical. With this important event around the corner, we urge you to check out resources on the Society’s Election 2012 website. The website provides information about voter registration, absentee voting, polling place accessibility, and resources to learn more about your candidates including their stances on medical research funding. Please note that the National MS Society is a nonpartisan organization that neither supports nor opposes any political party or candidate for office.

Get out and vote on November 6th!

With election day, November 6th, quickly approaching, we at the National MS Society can't understate the importance of going to the polls to vote. This election is close and your vote counts. It's important that you be informed before going to the polls, so we've provided some links below for your review. If you need a ride to the polls, you may want to call your Senate or Congressional candidates, as they may be able to offer transportation. In addition to that, your local senior center may be able to help. See you at the polls! Find out more at the National Conference of State Legislatures on: Ballot Measure Initiatives in Your State Voter ID Laws in Your State Learn more about the 2012 Election and its impact on people living with MS. Visit the Society's Election 2012 webpage today!

Last Chance! Join the challenge today and help end MS!

This is your last chance to help double efforts to end MS! Join the Match Challenge today! It’s your last chance to double efforts to end MS! Your gift to the National MS Society by October 31 will be matched dollar-for-dollar — up to a total of $200,000 — by the Dan family, whose daughter was diagnosed with MS in 1998. That's double the impact on the lives of people with MS. And it's double the resources for important advancements — like research on myelin repair, which may one day stop the progression of MS for the Dans' daughter and those in your life living with MS. Because of supporters like you, we are ever closer to ensuring a brighter future for all families by propelling research and providing critical programs and services for people with MS. Don’t delay! The October 31 deadline is almost here — donate now! Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. Remember — The Dan family will match any gift you give in response to this offer ONLY through Oct. 31. Make your donation today! Please note that this offer only applies to gifts received in response to this campaign. Other fundraising efforts — including Bike MS and Walk MS — do not qualify for this match. Thank you for your understanding and support!

October 31 is almost here - Have you taken the challenge yet?

MS® National Multiple Sclerosis Society. Every Dollar Gets DOUBLED October 31 is almost here — Have you taken the challenge yet? We need your help in doubling efforts to end MS — Today! Today we are ever closer to a world free of MS. As someone whose life has been touched by MS, you know we can't stop now. MS has finally met its match. For every gift you make to the National MS Society by October 31, the Merwyn and Dolly Dan family will match your donation dollar-for-dollar — up to a total of $200,000. There is still time to make a gift and help double the impact on efforts to help people with MS. When the Dan's daughter was diagnosed with MS, it changed their family forever. That's why they are leading this essential effort to raise up to $200,000 by October 31 for important advancements — like research on myelin repair, which may one day stop the progression of MS for the Dans' daughter and those in your life living with MS. Please join our Match Challenge today! Because of supporters like you, we are ever closer to ensuring a brighter future for all families by propelling research and providing critical programs and services for people living with MS. Thank you for your support! Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. Hurry! Time is running out to make a gift before October 31! Just click here to make your donation today! Please note that this offer only applies to gifts received in response to this campaign. Other fundraising efforts — including Bike MS and Walk MS — do not qualify for this match. Thank you for your understanding and support!

It's not too late - Take the challenge today!

Do you dream of a world free of MS? Help make it reality. Since Merwyn and Dolly Dan's daughter was diagnosed with MS in 1998, their family has dreamed of a world free of MS. As someone whose life has been touched by MS, you no doubt share the same dream. And MS has finally met its match. It’s not too late to join the Match Challenge today and help us end MS forever! For every gift you make to the National MS Society by October 31, the Dan family will match your donation dollar-for-dollar — up to a total of $200,000. That's double the impact on the lives of people living with MS. Because of supporters like you, we are ever closer to ensuring a brighter future for all families by propelling research and providing critical programs and services for people living with MS. Thank you for your support! Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. The Dan family will match any gift in response to this offer through October 31. Just click here to make your donation today! Please note that this offer only applies to gifts received in response to this campaign. Other fundraising efforts — including Bike MS and Walk MS — do not qualify for this match. Thank you for your understanding and support! DONATE NOW National MS Society | View as Web page | 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. This message was sent to wrennstephen844@gmail.com . To ensure that you continue to receive our e-mails, please add us to your address book.

Victory in Medicare Lawsuit

Many times a year, MS Activists around the country contact their legislators to urge support of policies and funding that will benefit people living with multiple sclerosis (MS). Today, the Society is pleased to announce that another type of activism—judicial action—has resulted in a settlement that will help ensure that people with MS get the home health care, skilled nursing home stays and outpatient therapy they need. Just two years ago, the Society joined as an original plaintiff in a class action lawsuit that challenged the Centers for Medicare and Medicaid Services’ (CMS) inappropriate and illegal practice of denying Medicare coverage to those who are unable to show that they are improving from certain skilled care services, including therapy. This practice has been particularly impactful for people with chronic, degenerative diseases such as MS for which services such as therapy may be exactly what is needed to help slow deterioration. As a result of the lawsuit, the government has agreed to take corrective action so that it will not happen in the future. The government will revise relevant portions of its Medicare Benefit Policy Manual and engage in a nationwide Educational Campaign about the corrected maintenance coverage standards. Members of class will also be entitled to a re-review of their denied claim within the next year. We at the National MS Society are very pleased with the progress which has been made in this case. Medicare beneficiaries living with MS and other chronic illnesses will now definitively be able to receive important needed health care services that prevent decline and maximize independence. To learn more about this important settlement and about one of its inspirational plaintiffs who lives with MS, click here. The Society recognizes the work of the Center for Medicare Advocacy, Inc. which has coordinated the legal proceedings for plaintiffs in this case and acted as lead counsel. The other national organizations that entered the case as plaintiffs are: Parkinson’s Action Network, the Alzheimer’s Association, Paralyzed Veterans of America, United Cerebral Palsy and the National Committee to Preserve Social Security and Medicare.

Here are 200,000 reasons we're closer to ending MS

Merwyn and Dolly Dan's daughter was diagnosed with MS in 1998 and it changed their family forever. Since that day 15 years ago, the Dans have dreamed of a world free of MS. As someone whose life has been touched by MS, you no doubt share the same dream. But today, we are doing more than imagining. Together, we're working tirelessly to make this dream a reality. Please join the Match Challenge today! For every gift you make to the National MS Society by October 31, the Dan family will match your donation dollar-for-dollar — up to a total of $200,000. And because MS has touched your life personally, you know firsthand the power of having double the resources for important advancements — like leading research on myelin repair, which may one day stop the progression of MS for the Dans' daughter and those in your life living with MS. Your support means so much — for the Dan family and for all the families you know whose lives were changed forever on the day an MS diagnosis was made. MS has finally met its match. And you can help us ensure a world free of MS. Because of supporters like you, we are ever closer to ensuring a brighter future for everyone impacted by MS by propelling research and providing critical programs and services for people living with MS. Thank you for your support! Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society

Speaking Opportunity for Multiple Sclerosis Activists

WEGO Health MS Health Activists - Speak up! As part of our ongoing mission to empower Health Activists, educate, and raise awareness, WEGO Health will be holding a virtual panel for active members of the online health community and we wanted to make sure you had a chance to participate. This panel will bring together other patients and caregivers for an informal discussion of the topics that matter most to you. You can RSVP here: Multiple Sclerosis Panel We hope you will join us to share your story and your thoughts with others who are interested. If you can't join us or if this panel isn't the best fit, please join the WEGO Health Network at www.wegohealth.com for additional opportunities and programs - we'd love to have you as a member! Cheers, Susan M. Vice President, Community Relations follow on Twitter | friend on Facebook | forward to a friend Copyright © 2012 WEGO Health, All rights reserved. You are receiving this email because you are an active member of the online health community. Our mailing address is: WEGO Health 180 Lincoln St, Fifth Floor Boston, MA 02111 Add us to your address book unsubscribe from this list | update subscription preferences

Upcoming Teleconference Series

The Spectrum of MS: Fall 2012 Series Join us from the comfort of your own phone for informative conference calls on a diverse range of topics for people living with MS. To ensure timely receipt of materials, please register one week prior to call. Register today! Registration is FREE. For more information or to register online, or call 1-800-344-4867, option 1. Wednesday, October 24, 2012 6:30 - 7:30 p.m. Top 10 List of MS Questions This call will address the most common questions and concerns facing individuals newly diagnosed with MS. Speaker: Angela Applebee, M.D. Director of the MS Center of Northern New England at Fletcher Allen Health Care Registration Deadline: October 17, 2012 Wednesday, November 28, 2012 6:30 - 7:30 p.m. Invisible Symptoms People who have “invisible” MS symptoms have a unique set of difficulties. This call will address the “invisible” symptoms of MS such as pain, fatigue, and cognitive issues and how to manage these symptoms effectively. Speaker: Pam Mills, RN, BSN, MSCN Registered nurse who specializes in oncology and multiple sclerosis. Registration Deadline: November 21, 2012 Wednesday, December 12, 2012 6:30 - 7:30 p.m. MS: A Family Affair MS comes with many challenges for both the individual and family living with MS. Changes occur in family roles and everyday functions. Learning about MS and communicating are effective strategies for coping with these challenges and developing a healthier lifestyle. Speaker: Peggy Crawford, Ph.D., PSYD, Clinical Psychologist, Cincinnati Children’s Hospital; contributing author to Multiple Sclerosis: A Guide for Families Speaker: Bonnie Danowski, family member of a person with MS and active volunteer for NMSS Arizona Chapter Registration Deadline: December 5, 2012 Register today! Registration is FREE. For more information or to register online, or call 1-800-344-4867, option 1. Stay tuned for spring session teleconferences taking place in April, May, and June 2013. Upcoming topics: Bowel & Bladder, Sex, and Progressive MS. This educational series is made available through the collaboration of the following chapters of the National Multiple Sclerosis Society: Connecticut, Greater New England, Long Island, New Jersey Metro, New York City - Southern New York, Rhode Island and Upstate New York. National Multiple Sclerosis Society Greater New England Chapter P.O. Box 845945 Boston, MA 02284-5945 1-800-344-4867 http://www.msnewengland.org/

Register NOW for your FREE tickets: Making Connections: Annual Meeting of Members & Conference

Making Connections: Annual Meeting of Members & Conference Saturday October 20, 2012 9am-3pm REGISTER NOW for your FREE tickets This conference includes MS education, annual meeting of members, research update and a health & resource EXPO. Conference attendees will have the opportunity to visit the exhibitors to learn about health, recreation, independence products and services and to network and share experiences with others living with MS. Updates on MS research at all 4 sites. DCU Center, Worcester MA: The Hope of Emerging Therapies in Multiple Sclerosis with Elliot Frohman, MD, Director, MS Program, Dept. of Neurology, University of Texas Southwestern Medical Center. Augusta Civic Center, Augusta ME: MS & Rehabilitation: What’s New that can Help You? with Alexius E.G. Sandoval, MD, Rehabilitation Medicine, EMMC Executive Court Banquet Facility, Manchester NH: MS Research: What’s on the Horizon with Nicholas LaRocca, PhD, Director of Health Care Delivery and Policy Research at the National MS Society. The Essex, Essex VT: Mapping the Way: Directions in MS Research with Ann Cabot, DO, Concord Hospital Neurology Associates Registration deadline: October 12, 2012 Cost: FREE To register: Call 1-800-344-4867 Register online: Augusta, Maine Worcester, Mass. Manchester, N.H. Essex, Vt. Because MS affects more than just the individual diagnosed, our programs welcome friends and family members unaccompanied by a person with MS. If you cannot attend but would like to vote by proxy, fill out the proxy form. This program is handicapped accessible This program not suitable for children. Adults with MS and their adult guests National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

Federal Focus - October 2012

Congressional Agenda as Election Approaches In September, Congress passed and the President signed into law a Continuing Resolution that will keep the federal government and its programs operating for the next six months. This was necessary because Congress did not pass its twelve appropriations bills before the start of the fiscal year, October 1. As a result, priorities for the MS community such as funding for the National Institutes of Health (NIH) and MS research in the Congressionally Directed Medical Research Programs (CDMRP) are not likely to be determined for quite some time. Congress could finalize funding before the end of 2012 or wait until after the new Congress is sworn in next year. Their course will at least partly be determined by the outcome of the November elections. Weighing on Congress’s mind are the across-the-board cuts known as “sequestration” scheduled to take effect in early January 2013. Sequestration is required under the Budget Control Act because the Joint Select Committee on Deficit Reduction (the “Super Committee”) failed to reach a long-term compromise to reduce the federal deficit. The cuts will total $1.2 trillion in federal savings over the next ten years, with half of the cuts coming from defense spending and half from non-defense spending. Medicaid, Social Security, and Medicare beneficiaries are exempt from these cuts, but Medicare providers could face up to a 2% reduction each year. In mid-September, the Office of Management and Budget (OMB) released a report estimating the amount each federal agency would be cut. Under sequestration, many of the key healthcare agencies would be adversely affected. For example, OMB estimated that the NIH would face $2.52 billion in cuts and the Food and Drug Administration would lose $318 million. The Society joined over 3,000 national, state, and local organizations in a letter to Congress urging them to work with the President to avoid sequestration and protect non-defense discretionary programs that support important work like medical research and public health as much as possible. There is a small group of Senators talking and trying to reach a comprehensive and more specific deficit reduction that could delay sequestration, but consensus for now is far off and will also likely be impacted by the election. Medicare Prescription Drug Open Enrollment – Act by December 7 If you receive prescription drug coverage through Medicare Part D, now is the time to review your coverage choices and change to another plan-- if you need to. Medicare Part D’s Open Enrollment period begins on October 15th and ends on December 7th. This is the only time you can switch Medicare prescription drug plans during the calendar year unless you qualify for a special enrollment opportunity. Current enrollees should have received a notice from their plan if any changes are planned regarding the amount they will have to pay in premiums or out-of-pocket expenses or changes to the formulary (the list of medications the plan will cover). If you did not receive such a notice, you have the right to request it from your plan. To learn more about Medicare Part D in English or Spanish, see the official website. To speak with an MS Navigator, call us at 1-800-FIGHT-MS (1-800) 344-4867.

Reminder -- Making Connections: Annual Meeting of Members & Conference

Making Connections: Annual Meeting of Members & Conference Saturday October 20, 2012 9am-3pm This conference includes MS education, annual meeting of members, research update and a health & resource EXPO. Conference attendees will have the opportunity to visit the exhibitors to learn about health, recreation, independence products and services and to network and share experiences with others living with MS. Updates on MS research at all 4 sites. DCU Center, Worcester MA: The Hope of Emerging Therapies in Multiple Sclerosis with Elliot Frohman, MD, Director, MS Program, Dept. of Neurology, University of Texas Southwestern Medical Center. Augusta Civic Center, Augusta ME: MS & Rehabilitation: What’s New that can Help You? with Alexius E.G. Sandoval, MD, Rehabilitation Medicine, EMMC Executive Court Banquet Facility, Manchester NH: MS Research: What’s on the Horizon with Nicholas LaRocca, PhD, Director of Health Care Delivery and Policy Research at the National MS Society. The Essex, Essex VT: Mapping the Way: Directions in MS Research with Ann Cabot, DO, Concord Hospital Neurology Associates Registration deadline: October 12, 2012 Cost: $10 per person. This program includes lunch. Limit 2 adult guests per registrant. For persons with MS: If you would like complimentary admission, please register by phone at 1-800-344-4867 and indicate that you would like complimentary admission. To register: Call 1-800-344-4867 Register online Because MS affects more than just the individual diagnosed, our programs welcome friends and family members unaccompanied by a person with MS. If you cannot attend but would like to vote by proxy, fill out the proxy form. This program is handicapped accessible This program not suitable for children. Adults with MS and their adult guests 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.

The one thing every family deserves

Every week, while most of us go about our daily lives, 200 more families are turned upside down by a MS diagnosis. That's 200 too many. Even one is too many. Thanks to generous supporters like you, cutting-edge research is advancing. Families are receiving essential support and resources. But, we can do even more. Can I count on you to make a gift today? Only with your help can we stop MS and give families the tools to deal with the realities of living with this disease. Together we can make a difference for the families of today—and of tomorrow. I hope I can count on you to make a donation now. Sincerely, Katharine George National Senior Director of Database Marketing National MS Society

One More Chance: Help Push Disability Rights Treaty Over the Finish Line

You have received previous alerts urging you to contact your Senators to support the Convention on the Rights of Persons with Disabilities (CRPD) and many of you have responded. Without your hard work, the CRPD would not have made it through the Senator Foreign Relations Committee on July 26th--the 22nd anniversary of the Americans with Disabilities Act (ADA)--with a bi-partisan vote and it would not have the strong bipartisan support it has today. Thank you for your hard work in getting the CRPD where it is today! We need your help again, even if you’ve already taken action – please keep reading and take action today! Now we need your help to finish the ratification process. The CRPD is an international disability treaty that essentially takes the ADA international. It affirms the same values as the ADA including equality, independence, and dignity for all persons with disabilities. The treaty has been signed by the President, transmitted by the President to the Senate, passed through the Senate Foreign Relations Committee and now the final step towards ratification is a full vote on the Senate floor. Last week, before leaving for recess which lasts until the election, debate on the Senate floor signaled the intention of the bipartisan champions to bring the CRPD to a vote during the lame duck session—the time after the November election and before the new Congress is convened in January. The bipartisan group of champions includes: Senators McCain (R-AZ), Durbin (D-IL), Kerry (D-MA), Barrasso (R-WY), Harkin (D-IA), Udall (D-NM), Moran (R-KS), and Coons (D-DE). We’re asking for your help, again, in order to get through the final stages of the ratification process. While your Senators are home, they need to hear that this treaty is important to you. Please click here to email you Senators while they are home and ask them to commit to vote yes on the CRPD! This grassroots effort will hopefully line us up for a strong floor vote once Congress returns for the lame duck session. Thank you, once again, for your help!

The one thing every family deserves

Dear Stephen, For many families, a diagnosis of MS can change everything: Daily activities become increasingly challenging. Children carry adult-sized responsibilities. Family milestones are cut short—or missed altogether. But you can help us change all that. The good news is that research is advancing faster. Families are receiving more resources and support than ever. But we can't stop now. Every day and every dollar gets us one step closer to stopping MS and changing lives. Will you join the movement by making a donation today to support families and move us closer to a world free of MS? With your help, we can end MS forever, ensuring that one day every mom, dad, and grandparent will be there for all of life's milestones. Now that's a happy memory. Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. The Society understands that every person's situation and financial abilities are different. If you or a loved one are living with MS and need help, please visit this toolkit for valuable family resources. Your gift directly helps: fund cutting-edge research to end MS, provide resources and support to families, protect future generations from the uncertainty of MS National MS Society | View as Web page | Legal Notice/Privacy Policy | Email Preferences | Unsubscribe 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® Please do not reply to this email as we are unable to quickly respond to messages sent to this address. To receive information about living with MS, Bike MS® or Walk MS® — or to contact National MS Society staff in your area — please visit our Web site. 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 This message was sent to wrennstephen844@gmail.com . To ensure that you continue to receive our e-mails, please add us to your address book. ©2012 National Multiple Sclerosis Society. All rights reserved.

MSConnection Fall 2012

Table of Contents — Fall 2012 Issue MSConnection cover thumbnail Top Stories From the President McGraw Family takes leadership role in MS NOW Annual Meeting of Members & Conference News Coupon Bill Passes the Mass. House and Senate Make your vote count Programs Can We Talk? Motor Vehicle Cost Saving Tips Massachusetts Lifespan Respite Coalition Meet our Two Summer Fellows Computer Outreach Program 2012 Multiple Sclerosis Internship Program Caring Connections Café con Leche Program Highlights Caregivers Giving Care Research Research Advocate New Findings at AAN Meeting New Study on Marijuana Advocacy Federal Massachusetts Wanted: Ideas for change Government Relations Committee Volunteers Wanted! Insurance Coverage for Foot Drop walking devices MS Activist Blog Action Alert Health Care Reform Implementation Wanted: MS “Grasstops”! Improved Access to health care in rural areas Volunteers A Volunteer’s Perspective: What it’s like to volunteer in the office Fundraising More Ways to Give Bike MS A Great Turnout for the Eighth Annual MS Plane Pull Fashion Plates Boston Volvo 5K Road Race Climb to the Top Calendar of Events - see current calendar Classified Ads - see current listings Programs Catalog - see upcoming programs list National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org 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

Upcoming Event -- Making Connections: Annual Meeting of Members & Conference

Making Connections: Annual Meeting of Members & Conference Saturday October 20, 2012 9am-3pm This conference includes MS education, annual meeting of members, research update and a health & resource EXPO. Conference attendees will have the opportunity to visit the exhibitors to learn about health, recreation, independence products and services and to network and share experiences with others living with MS. Updates on MS research at all 4 sites. DCU Center, Worcester MA: The Hope of Emerging Therapies in Multiple Sclerosis with Elliot Frohman, MD, Director, MS Program, Dept. of Neurology, University of Texas Southwestern Medical Center. Augusta Civic Center, Augusta ME: MS & Rehabilitation: What’s New that can Help You? with Alexius E.G. Sandoval, MD, Rehabilitation Medicine, EMMC Executive Court Banquet Facility, Manchester NH: MS Research: What’s on the Horizon with Nicholas LaRocca, PhD, Director of Health Care Delivery and Policy Research at the National MS Society. The Essex, Essex VT: Mapping the Way: Directions in MS Research with Ann Cabot, DO, Concord Hospital Neurology Associates Registration deadline: October 12, 2012 Cost: $10 per person. This program includes lunch. Limit 2 adult guests per registrant. For persons with MS: When registering please indicate if you would like complimentary admission To register: Call 1-800-344-4867 Register online Because MS affects more than just the individual diagnosed, our programs welcome friends and family members unaccompanied by a person with MS. If you cannot attend but would like to vote by proxy, fill out the proxy form. This program is handicapped accessible This program not suitable for children. Adults with MS and their adult guests

New Pill Approved

Click Here to Read the article.

Federal Focus - September 2012

Register Today: National Forum on Disability Issues The Society is one of more than seventy organizations sponsoring the 2012 National Forum on Disability Issues—the only national Presidential candidate event focusing solely on issues specific to the disability community. The Forum will take place in Columbus, Ohio on September 28th. What can you do to help with this exciting event? First, you can urge the candidates to attend the Forum. President Barack Obama, Presidential Nominee Governor Mitt Romney and Ohio Senate candidates U.S. Senator Sherrod Brown and challenger Josh Mandel have all been invited, but it would really help for them to hear from the public about the importance of this Forum. Candidates will share their positions and answer questions on a wide range of disability issues including employment, health care, long-term services and supports, education, transportation, housing, and research. To read sample example invitations to the candidates and send your own, go to this site. Second, you can RSVP and listen to the live webcast on September 28th from 12:30 PM – 3:30 PM EST. It’s important to listen and get educated. Over 14.7 million Americans with a disability voted in the 2008 election. With one out of every five Americans living with a disability today, our voices will play a critical role in the 2012 election. Congress Returns Next Week after Recess For the past month, members of Congress have been home for August recess in their states. This is always an important time for constituents to meet with their members and particularly this year, since it’s an election year. MS activists across the country have been meeting with members, reminding them of funding priorities for the MS community, especially MS research funding and the Lifespan Respite Care Program that supports family caregivers. Check out some of the great pictures here and here. Thanks to the MS Activists who took time to schedule and attend these meetings—your advocacy is critical to our continued success! Upon their return to Washington next week, Congress will only have a few legislative days left before the election in two months. During this time, Congress is expected to vote on a ’Continuing Resolution’ that would keep the government and its departments and programs operating past the beginning of the new fiscal year (October 1) and into early next year. This means that final funding levels for our 2012 priorities--MS research in the Congressionally Directed Medical Research Programs (CDMRP), funding for the National Institutes of Health (NIH) and funding for the Lifespan Respite Care Program--won’t be determined until after the new year. Lifespan Respite Grants Announced The federal Lifespan Respite grants were announced last week and are going to the following states: Alabama, Arizona, Iowa, Massachusetts, Nevada, North Carolina, Rhode Island, South Carolina, Texas and Virginia. Iowa is a new grantee and the remaining states have received grants in the past, with the new funding serving to sustain and grow their programs. The Lifespan Respite Care Program was enacted in 2006 and provides funding for states to establish or enhance statewide systems that coordinate and increase family caregivers’ access to respite services. A recent National Alliance for Caregiving survey reminded us that while important to keep loved ones at home for as long as possible, caregiving can be strenuous. The survey found that caregivers of people with MS spend an average of 24 hours a week on caregiving responsibilities, 64% were emotionally drained, and 22% had lost a job due to caregiving. To help provide proper support and respite for family caregivers, MS activists advocate for appropriations for the Lifespan Respite Care Program every year. These grants are a product of their success!

Just hours to go: Join the MS movement to end MS NOW!

Your gifts are funding an MS Research Revolution — bringing more MS scientists to the field and driving more MS research faster than ever. But it’s still not enough. Every week, 200 more Americans will learn that they have MS. But, with 48 hours left to go, you can help reach the $50,000 goal — funding that will drive research to: STOP MS in its tracks, ensuring the disease can't do any more damage RESTORE what the disease has taken, healing nerves and reversing the symptoms of MS END MS forever, protecting future generations from the uncertainty of MS There are just 48 hours left to reach this important fundraising goal. Every dollar ensures investment in more promising projects — projects that will help uncover the answers and lead to solutions for everyone affected by this disease. Please don't wait — no opportunity can be wasted. NOW is the time to make things happen. So please donate today — help fund the research that will END MS forever. Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society

A bold step to END MS forever

If the uncertainty of MS continues to affect even one person, that's one too many. MS is unpredictable. It most commonly attacks men and women — right in the prime of life. But your support is the driving force behind research that will ultimately END MS — tomorrow and for generations to come. There are just 6 days left. Time is running out to raise $50,000 — we can't do it without you! Giving a gift today could mean a better understanding of what causes MS, what triggers it, and how it can be prevented forever. Right now your gifts are funding: Massive screening studies to identify genes common among people who have MS Research to identify environmental factors that may trigger MS Studies looking at the immune system to understand how and why it turns against the body's own nerves Any of these studies, or the countless others you've helped fuel, could uncover the secret that will END MS forever. And NOW is the time to join the MS Research Revolution — give today, help raise $50,000 before August 30th to keep the momentum going, and help ensure that no stone is left unturned, no path is left unexplored. Please, donate today and help put an END to MS for good! Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society

Share the Importance of MS Activism

Advocacy is empowering. Advocacy drives change. Your connections count and your story can make a difference. Advocacy is something everyone can do. You know this because you are an MS Activist. As an MS Activist and an ambassador of activism’s value, we urge you to share this video about the importance of activism through your social media networks—on Facebook, Twitter, and blogs. Others in your network may realize that they too can be an MS Activist. Share this video, along with the message that activism is something that everyone can do and that it has a real world positive impact on people affected by MS. At the state and local levels, MS Activists are working to tackle the high cost of disease modifying therapies, to create and to preserve state income tax credits for accessible home modifications, and to strengthen accessible parking laws. At the federal level, MS Activists have recently helped add an aggressive form of MS to the Social Security Administration’s "Compassionate Allowances Initiative" so that some people with MS can get disability benefits quicker. MS Activists also helped secure an additional $3.8 million to fund MS research through the Congressionally Directed Medical Research Programs (CDMRP), bringing the total amount allocated over five years to MS research through the CDMRP to more than $20 million. Our MS Activist network is now over 70,000 strong and growing every week. Help make it even stronger by sharing this great video that features MS Activists from around the country speaking from the heart and sharing their story about what activism means to them. We are all MS Activists. Together, we will move closer to a world free of MS.

Your chance to RESTORE what's been taken by MS

Imagine a 25-year-old woman living with MS. The disease took her ability to walk, so she has spent the last three years using a wheelchair. Now imagine the day she is able to stand up again — leave her wheelchair behind — and dance with her husband once again. Respond in the next week to help raise $50,000. Funds that make visions like this one a possibility for every single man, woman, and child living with MS. Your support will help RESTORE what MS has taken from so many people. Until recently, there was little belief that the nervous system could be repaired. But your support is funding new rehabilitation strategies and symptom management techniques that may one day reverse the damage caused by MS. Time is running out, and NOW is the time to ensure no opportunity is wasted. Help more than 400,000 people with MS to live their best lives. Join the MS Research Revolution with a generous gift today and help RESTORE what's been lost to MS. Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society

While They're Home, Urge Your Senator to Support Disability Rights

As we’ve already noted in previous action alerts, last month, on the 22nd anniversary of the signing of the Americans with Disabilities Act (ADA), the Convention on the Rights of Persons with Disabilities (CRPD) was voted favorably out of the Senate Foreign Relations Committee with a 13-6 bipartisan vote! This international disability treaty affirms the values of the ADA including equality, independence, and dignity. The next step towards treaty ratification is a full vote on the Senate floor and that’s why we’re contacting you once again. Before leaving for August recess, Senate Majority Leader Harry Reid issued a statement of support in the Congressional Record encouraging ratification of the CRPD. When the Senate is back in session in September, a bipartisan group of champions will lead the treaty to its final vote on the Senate floor. This bipartisan group of champions includes: Senators McCain (R-AZ), Durbin (D-IL), Kerry (D-MA), Barrasso (R-WY), Harkin (D-IA), Udall (D-NM), Moran (R-KS), and Coons (D-DE). Many of you have already heard about the CRPD and contacted your Senators. We want to thank you for all of your support! We’re asking for your help again in order to get through the final stages of the ratification process. It is now August recess and members of Congress are back home in their states. One or both of your Senators have not yet publically announced their support for the CRPD. Please click here to email your Senator(s) while they are home and ask them to commit to vote yes on the CRPD! You will be prompted to enter your zip code and then an email to send to your Senator(s) will appear. If you happen to be attending a town meeting hosted by your Senator, please ask about support for this treaty. This will hopefully line us up for a strong floor vote once Congress returns in September. Thank you, once again, for your help!

One way to help STOP MS in its tracks

I'll never have to worry about another MS relapse! STOP MS NOW Right now, every 50 minutes, an American is diagnosed with MS. That’s almost 30 people a day! That's why your donation, by August 30, is critical to driving research ever closer to the solution that will STOP MS in its tracks. In fact, gifts from you and compassionate people like you have helped uncover every major breakthrough in MS research for the last 65 years, including: Development of drugs to reduce the recurrence and severity of relapses Identification of the four types of MS lesion patterns for a better understanding of MS NOW is the time to keep this momentum going. Join the MS Research Revolution with a generous gift today and help STOP MS in its tracks. Your support can help raise $50,000 by August 30 — funding that will revolutionize care and treatment options — bringing real solutions to the men, women, and children who are living with MS. Significant progress has been made, but your gift will help uncover critical solutions. Please donate today! Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society

CogniFitness: Keeping the Mind Moving

The National MS Society, Greater New England Chapter presents CogniFitness: Keeping the Mind Moving Up to 60% of people with MS experience cognitive changes in some form. Come to discuss issues and engage in small group practical activities. Learn exercises and strategies to help focus your attention, improve memory, planning, and problem solving skills. New Hampshire Saturday, September 8th, 10:30 a.m. to 1:30 p.m. Cheshire Medical Center, Dartmouth-Hitchcock Keene in Keene, NH Presenter: Jan Ray-Thompson, OTR/L Please register by: August 31 Vermont Saturday, September 15th, 10:30 a.m. - 2 p.m. Nolin-Murray Conference Center in Springfield, VT Presenter: Brant Oliver, N.P, M.S.N, M.P.H Please register by: September 11 To Register, call 1-800-344-4867 or visit us online. Registration includes materials and a light lunch. Limit one guest per registrant. Space is limited. Advance registration is required. Because MS affects more than just the individual diagnosed, our programs welcome friends and family members unaccompanied by a person with MS. Our programs often fill up quickly. While we fully understand you may need to cancel for various reasons, we ask that you let us know in advance if you cannot attend a program you’ve registered for whenever possible. This will help reduce our costs and enable people who may be on a waiting list to have the opportunity to join the program. National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

Federal Focus - August 2012

Disability Rights Treaty Sent to Senate for Vote On July 26, 1990, President George H.W. Bush signed into law the Americans with Disabilities Act (ADA)--a landmark civil rights law that ensures equal rights for people with disabilities in the community and in employment. This year, on the ADA's 22nd anniversary, another monumental step was taken to recognize the rights of people with disabilities--the Senate Foreign Relations Committee approved the Convention on the Rights of Persons with Disabilities (CRPD) with bipartisan support. The CRPD is a treaty that describes the obligations of ratifying countries to promote, protect, fulfill, and ensure the rights of persons with disabilities. The treaty embodies the American ideals that formed the basis of the ADA--empowering persons with disabilities to be independent and productive citizens. The United States signed the CRPD in 2009, but in order for it to have the force of law, the U.S. Senate must ratify it by a two thirds vote. Over the past few months, MS activists have helped move this treaty forward. The Senate Committee held a hearing on it in mid-July and just last week, voted it out of Committee. The CRPD was subsequently sent to the Senate “floor,” where Senators may vote on it at any point. In the past week alone, MS activists have sent over 3,100 emails to their U.S. Senators urging them to vote on the CRPD as soon as possible. We will keep everyone informed with the hope that the Senate ratifies this important treaty soon! House Approves MS Research Funding, but Further Action on Appropriations Likely Stalled In mid-July, the House of Representatives passed its funding bill for the Department of Defense for fiscal year 2013. Each year, MS activists urge their members of Congress to include funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP) in this bill. Over the past five years, over $20 million of CDMRP funding has supported high-risk, high-reward MS research. The bill that passed the House this year included $5 million for MS research—an increase over last year’s $3.8 million. It is likely that we will not have final funding levels for this priority or others like funding for the National Institutes of Health (NIH) and the Lifespan Respite Care Program that supports family caregivers for quite some time. Earlier this week, Congressional leadership announced that they had reached a deal to keep funding the government past the beginning of the fiscal year (October 1) and until March 2013. This will delay final funding level decisions until after the election, when the new Congress begins. MS activists will still be meeting with their lawmakers about our funding priorities while members of Congress are home over August recess—to remind them of the importance of support for the MS community. Two New Health Provisions in Effect Preventive Care: As of August 1, 2012, all new health insurance plans are required to provide women with coverage of eight preventive health benefits including well-woman visits and diabetes screening for pregnant women with no copay or deductible. These additional benefits build on the list of vital screenings and tests that health plans must cover for all plan enrollees as a requirement of the Affordable Care Act at no cost to the patient. Because the additional women’s preventive health benefits apply only to plans issued on or after August 1st, most women will have to wait until their policy is renewed to see them. The renewal date is typically the first day of January in employer-based insurance plans. Insurance Rebates: August 1st was also the deadline for health insurers to issue rebates to policyholders for premiums they paid in 2011 that were higher than the new standards that require insurers to spend a set percentage of premiums directly on care. For small group plans, insurers must spend 80% and for large groups, plans must spend at least 85% of premium dollars on medical care. Any premium amounts they charge above that must be rebated back to their customers. In the last several months alone, over $1 billion has been rebated back to approximately 12 million policyholders across the country.

Action Needed Within 36 Hours: Urge Senate to Vote for Disability Rights

Twenty-two years ago, on July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law by President George H.W. Bush. The ADA is a landmark civil rights law that ensures equal rights for people with disabilities in the community and in employment. This year, on the ADA's anniversary, the Convention on the Rights of Persons with Disabilities (CRPD) was voted favorably out of the Senate Foreign Relations Committee with bipartisan support and sent to the Senate floor! Click here to push the CRPD through the final step! For those of you who have a Senator on the Foreign Relations Committee, you’ve already heard all about the CRPD and we want to thank you for all of the emails you sent – they helped make the difference! Now the CRPD is entering its final stage and we need MS Activists in all 50 states to help push for a vote in the U.S. Senate. In order to have the force of law, the U.S. Senate must ratify the CRPD by a two thirds majority vote. Ratification of this crucial treaty ensures that people with disabilities, including people living with MS, have equal rights and extends disability rights globally. We believe there is still time for floor action this week before the August recess (which starts on August 3). In order for a vote to happen this quickly, we need to make sure that every Senator hears from constituents in support for ratification. Within the next 36 hours, click here to email your Senators and urge them to support the CRPD. Thank you, once again, for your help!

Coupon Bill language victory and final call to action!

A key grass-roots victory to report! Thanks to your calls and emails to the legislature Governor Patrick signed the state budget which included the “coupon bill language” which now allows all Massachusetts consumers to utilize all pharmaceutical discounts, coupons and assistance programs such as co-pay programs. This will help ensure individuals with MS can afford their treatments! The state budget also preserved language and funding for the chapter’s Home LINKS care management program! Although the formal legislative session is almost over there is one more bill that will impact people with MS we need people to take action on today! Background Two differing bills (House Bill 4155 and Senate Bill 2270) currently sit before a six person conference committee charged with negotiating the differences between the bills to come up with a single, compromise piece of legislation to send to Governor Patrick. Both bills propose to establish a Prevention and Wellness Trust Fund, which would provide grants to support community-based prevention and wellness programs. On the Senate version of the bill, we were able to secure with your advocacy an amendment that added “chronic disease management” as one of the purposes to be accomplished by programs funded through the Trust. The House version of the bill does not include that language. This difference is important because if the Trust purpose includes “chronic disease management”, this creates a great opportunity for programs such as the MS Home LINKS program to apply for access to these grant funds. If “chronic disease management” is not included, the availability of such funds for programs like Home LINKS is uncertain. Talking Points for MS Action Alert Members ACTION #1. Contact the Health Care Conferees (listed below) and ask them to include “chronic disease management” as one of the purposes of the Prevention and Wellness Trust Fund and adopt the language in Senate Bill 2270. - Representative Steven Walsh (617) 722-2430 - Senator Richard Moore (617) 722-4120 - Representative Ronald Mariano (617) 722-2300 - Senator Bruce Tarr (617) 722-1600 - Representative Jay Barrows (617) 722-2488 - Senator Anthony Petruccelli (617) 722-1634 Sample Dialogue My name is: ______________________. I am calling about the payment reform legislation currently being negotiated by the conference committee. In particular, I am calling to ask that language, adding “chronic disease management”, be included within the purposes of the Prevention and Wellness Trust Fund as it appears in Senate Bill 2270. The creation of a Prevention and Wellness Trust Fund is more than just advising healthy individuals to avoid unhealthy behaviors - Healthy individuals are not the only groups of individuals who need preventive and wellness programs. Individuals living with a chronic disease need assistance with daily management of conditions. This fund should also be used to prevent and manage conditions that worsen the quality of life. Studies have shown that the few dollars spent on prevention save thousands of dollars in treatment and inpatient care later. We cannot ignore the need to manage chronic diseases today and every day. I ask that the Representative/Senator support this language. Will she/he do so? Again, my name is ____________________. I can be reached at _________________ (provide telephone #) if the legislator has any questions. Thank you and please support our efforts to promote chronic disease management. National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org Advocacy Icon Jpg 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://www.nationalmssociety.org/ or 1-800-344-4867. 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

Another Push for Disability Rights Treaty

On July 12th, the Senate Foreign Relations Committee held the first hearing in the consideration of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This hearing was a success for the disability community and a significant step in the ratification process! The Committee is scheduled to meet again this Thursday, July 26—the 22nd anniversary of the Americans with Disabilities Act (ADA)—for the next step towards ratification, which is to ‘mark-up’ the treaty. Since this mark-up vote in Committee determines whether the full Senate will vote to ratify the treaty and your Senator is on this instrumental Committee, we need you to contact him/her once again! The treaty needs a simple majority vote to be sent to the full Senate. Supporters of the treaty have been out in full force, meeting with Senators and their staffs, and activists from around the country—like yourself—have been contacting Senate Foreign Relations Committee members expressing strong support for the treaty. And last week former Senate Majority Leader Bob Dole signaled his strong support in this guest commentary. It is particularly important for you to take action because while support for this treaty is strong, opponents have been mounting their arguments in attempt to stop its progress. Opponents are concerned that the treaty will take away their ability to decide on the best educational setting for their children and that it would somehow be a ‘back door’ for the incorporation of two other treaties which the United States has not yet ratified. The Society and other organizations supporting the treaty disagree with these interpretations and urge the U.S. Senate to do the right thing by voting to ratify the CRPD. Ratification will essentially take the ADA international and affirm and ensure the rights of people with disabilities around the globe. Please urge your Senator who is on the Foreign Relations Committee to support ratifying the CRPD by clicking here to email him/her. You will be prompted to enter your zip code and then an email will appear for you to easily send to your Senator’s office. We need to continue to make our voices heard! Thank you for your help!

Study Identifies Possible Target of Immune Attacks in Some People with MS : National MS Society

Research - Stop Researchers have identified a protein that may be a target of the immune attack in some people with MS, according to a new study published in The New England Journal of Medicine. An immune response to this protein – a protein called “KIR4.1,” which is found on several types of brain cells – was observed in the serum of 47% of people with MS who were tested. Further research is needed to confirm these findings, and to understand what the role of this protein may play in MS and its potential for developing new treatments. Rajneesh Srivastava, MSc and Bernhard Hemmer, MD (Technische Universität, Munich) led the international team, who are supported by grants from the German Ministry for Education and Research and the National MS Society, among others (2012;367:115-23). Background: Multiple sclerosis involves immune system attacks that damage the brain and spinal cord, particularly myelin (the substance that surrounds and supports nerve fibers). Myelin-making cells and nerve fibers are also damaged during the course of the disease. The spinal fluid of most people with MS contains increased amounts of a type of antibody called IgG. Antibodies are immune proteins directed against an immune target, or “antigen.” IgG antibodies are present almost exclusively in infectious and inflammatory disorders and are usually directed against the disease-causing agent. However, previous attempts to identify antigens to which antibodies are targeted in MS have failed. The current study focused on the serum portion of blood samples from people with MS and from others, rather than on spinal fluid. The study: In a series of experiments, the authors screened serum samples from people with MS and observed that IgG antibodies were attaching themselves to specific myelin-making cells. Using “proteomics” – advanced technology that scans hundreds of thousands of proteins simultaneously – they screened numerous proteins on the cells. They identified the protein KIR4.1 as the target of the IgG reaction. KIR4.1 is an ion channel; these are proteins that are active on the surfaces of several types of brain cells and are critical for cell function. The team then developed a method of testing people for the presence of antibodies against KIR4.1 in serum samples, and found antibodies to KIR4.1 in a substantial proportion of people with MS in comparison with others tested. In fact, the antibodies were found in serum of 186 of 397 (46.9%) people with MS, versus only 3 out of 329 people with other neurologic disorders, and in none out of 59 people without disease. Further studies revealed that when anti-KIR4.1 antibodies that were obtained from people with MS were injected into mice, abnormalities in the nervous system occurred. In previous studies, KIR4.1 has been shown to be important in myelin formation, so the authors conclude that this protein is a plausible candidate to be a target of the immune attack in at least some people who have MS. The investigators did not observe any clinical or other differences in people with MS who had the antibodies versus those who did not. How this protein may be involved in MS, and whether this finding will lead to new approaches to treating MS, awaits further research. Comment: In an accompanying editorial, Anne H. Cross, M.D (Washington University School of Medicine, St. Louis) and Emmanuelle Waubant, M.D., Ph.D. (University of California, San Francisco) discuss the strengths of this study. “First, the authors used an unbiased approach to search for serum antibodies specific to patients with multiple sclerosis and, once they found them, methodically sought the target,” they write. The specific role of the protein awaits definition, especially since half of the people with MS did not have the antibodies to KIR4.1. They note that even if these antibodies arise sometime after the nervous system has already sustained damage in MS, “it is conceivable that they may perpetuate destruction of the central nervous system.” Read more about efforts to stop MS in its tracks.

Your Help Is Needed to Secure MS Research Funding

Take Action! Tell Your Representative to Vote in Favor of More MS Research The House is set to vote this week on a bill that includes $5 million for the multiple sclerosis (MS) program within the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DoD) program that is funded annually via the Defense Appropriations Act. Because of the hard work of MS activists across the country, over $20 million has been allocated to MS research under the CDMRP over the past five years. It is important that you act now to ensure this funding stream is maintained for MS research! Ask your Representative to support at least $5 million for MS research in the CDMRP for FY2013, which could accelerate the path to finding a cure. Since its inception, the program has helped to fund research to better understand the origin of MS and unveil potential new therapies that will help slow progression and restore function. However, there are a large number of applications each year for the program and not all research can be funded because of limited money. Ask your Representative to vote in favor of MS research by including at least $5 million in the budget. Write them now!

Federal Focus - July 2012

Senate to Hold Hearing on International Disability Rights Treaty The Senate Foreign Relations Committee recently announced that it will hold a hearing on July 12th on the Convention on the Rights of Persons with Disabilities (CRPD), an international treaty which essentially takes the Americans with Disabilities Act international. The President signed the treaty in 2009, but in order for it to have the force of law—the United States Senate must ratify it by a two thirds majority. The Society has been working in close collaboration with other organizations like the U.S. International Council on Disabilities to increase support in the Senate and the Committee hearing is exciting progress towards ratification. Senate Committee Approves Funding for MS Priorities In mid-June, the Senate Appropriations Committee approved a bill that contains funding for many priorities for people affected by MS. MS activists have been weighing in with their members of Congress about these funding priorities since the spring. The Senate Committee-approved bill includes $30.72 billion for the National Institutes of Health (NIH), a small increase over the previous year. The NIH is the country’s premier institution for medical research and each year, dedicates around $120 million toward MS-related research. As part of the NIH funding, the Committee would provide $40 million for the Cures Acceleration Network, a new program that aims to advance the development of effective treatments and reduce significant barriers between research discovery and clinical trials. The Committee also provided $4.99 million for the Lifespan Respite Care Program that supports our nation’s 65 million+ family caregivers, $3.47 billion for the Low-Income Home Energy Assistance Program (LIHEAP), and $11.7 Billion for the Social Security Administration (SSA) to fund SSA’s day-to-day operational responsibilities and help speed the process of receiving disability benefits. There are several more steps before this bill becomes law, but its contents are promising and show that members of Congress are hearing MS activists’ messages that even with the continued difficult budget climate, investing in issues like MS research is important. U.S. Supreme Court Health Care Ruling After much anticipation, the U.S. Supreme Court ruled on June 28th to uphold most of the Patient Protection and Affordable Care Act (ACA). The ruling was a 5-4 decision, with Chief Justice Roberts as the swing vote. The Court decided that the cornerstone of the law—the individual mandate requiring people to have health insurance or face a financial penalty—is valid as a tax, even though the court simultaneously said the mandate is not permissible under the Constitution’s commerce clause. Because it has been deemed constitutional, the law’s individual mandate will require most people to have health insurance or face a fine, starting in 2014. There are exceptions to the mandate for people who cannot afford coverage even with a subsidy, and those with religious objections. The individual mandate is critical because it expands the pool of people paying for insurance--spreading the cost more widely and allowing other important provisions to continue like banning lifetime limits and ending discrimination based on pre-existing conditions. While the individual mandate was upheld, the high Court also ruled that the part of the law expanding Medicaid must change. As enacted, the law required states to expand their Medicaid programs or face losing the federal government’s entire contribution to the program. By a 7 to 2 vote, the court found this too coercive on states and struck it down. Now, rather than demanding that states expand their Medicaid programs, each state has the option of doing so. With this historic decision behind us, the Society will continue its work on the law’s implementation in the interests of people affected by MS and it will work with members of both political parties to further refine and improve public policies relating to this and other health-related laws. Bill to Support Drug and Device Approval Enacted Over the past two weeks, the House and Senate approved an important piece of legislation that expedites the review of drugs and devices by authorizing “user fees” – the Food and Drug Administration Safety and Innovation Act (S. 3187). After both chambers came to a compromise, the House quickly moved to pass the bill at the end of June with the Senate passing it shortly thereafter. This bill reauthorizes the Food and Drug Administration’s (FDA) ability to collect user fees for five years to provide funding for the prescription drug and device approval process. In addition to branded drugs, this bill incorporates user fees for generic and biosimilar applications for the first time. This bill also codifies some other important policies at the FDA. The user fee program essentially allows the FDA to charge drug and device firms a fee for every application they submit for review to the FDA. In return, there is an explicit expectation that the FDA will hire more staff and review these treatments faster, in order to get them on the market more quickly. In addition to determining the fee amount, this agreement incorporated a number of new policies. Two of the policies were supported by the Society: 1) to better incorporate patients’ views on benefits and risks of drugs and devices as they are being evaluated and 2) to improve the FDA’s ability to evaluate drugs using biomarkers and patient reported outcomes as clinical endpoints. The Society applauds Congress’ bipartisan work to get this legislation to the President so quickly and is happy that the FDA will continue to have resources to quickly and effectively evaluate drugs and devices for patients.

Senate Hearing Signals Progress for Disability Rights

The Chair of the Senate Foreign Relations Committee, Senator John Kerry (MA), announced that there will be a hearing on the Convention on the Rights of Persons with Disabilities (CRPD) on July 12, 2012 – this is great news and the next step toward ratification! In 2009, the United States signed the CRPD—an international treaty which essentially takes the Americans with Disabilities Act international. In order to have the force of law, the U.S. Senate must ratify it by a two thirds majority. The hearing will be chaired by Senator Dick Durbin from Illinois—an original sponsor of CRPD. One of your U.S. Senators is a member of the Senate Foreign Relations Committee. We need your help to urge your member to attend the hearing and support the CRPD. Please contact your Senator by email by clicking here and urge him or her to support ratifying the CRPD. You will be prompted to enter your zip code and then an email will appear for you to easily send to your Senator’s office. The CRPD package that the Obama Administration submitted to the U.S. Senate is consistent with U.S. laws and will not require additional appropriations. Ratification of this crucial treaty ensures that people with disabilities, including people living with MS, have equal rights and extends disability rights globally. Thank you for your help!

MSConnection Summer 2012

Table of Contents — Summer 2012 Issue MSConnection Summer 2012 thumbnail Top Stories 2012 Scholarship Recipients From The President MSconnection.org Study Shows Hotter Days May Worsen the Ability to Perform Mental Tasks in Some People with MS Save the Date: Chapter Annual Meeting & Conference News Where We Are: Health Insurance Exchanges Programs Dual Victories As First Time Chapter Driven Laws Are Enacted In Maine And Vermont Family Matters Finding Balance in the Household Teleconference Programs How I Communicate About MS with My Children Money Matters Working and SSDI What Are Job Accommodations and How Do I Get One? Living with MS The Dirt on Adaptive Gardening Café con Leche Research Research Advocate The Road of a Researcher BG-12 New Drug Application Advocacy Maine Massachusetts New Hampshire Vermont MS Activist Blog Action Alert Government Relations Committee Wanted: MS “Grasstops”! Volunteers What Kind of a Volunteer are You? Fundraising MileStones Gala 2012 Ride the Vineyard Climb to the Top Boston Marathon Strides Against MS Maine Honors Gail Kelly Orange Blossoms for MS Anime Boston Locke Middle School Ride with Us in 2012 MS Journey of Hope Muck Ruckus MS Northeast Link Up for MS Golf Tournament Accept the Challenge MS Harborfest Calendar of Events - see current calendar Classified Ads - see current listings

National MS Society’s Statement Regarding the United States Supreme Court Ruling on the Patient Protection & Affordable Care Act

The National Multiple Sclerosis Society supports the decision of the United States Supreme Court regarding the Patient Protection and Affordable Care Act. This ruling will have a significant, positive impact on many, including the millions of Americans affected by multiple sclerosis. Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families: Prohibition of coverage denials based on pre-existing conditions: Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need. Prohibition of lifetime limits: Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care. Elimination of annual limits: Similar to lifetime limits, many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care. Extension of parent’s insurance to 26: Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy. Closing the Medicare Part D Coverage Gap: Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage. Pathway for Biosimilars: The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future. The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed--which is good news for anyone who uses biologic therapies. Background Although many people with MS have health care coverage, 70% of those with health insurance still struggle with the cost of health care and 30% are forced to spend less on food, heat, utilities and other necessities in order to afford their health care. Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive. On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs. Unlike some other diseases, MS is a lifelong illness--typically diagnosed between the ages of 20 and 30s--prime career and family building years. Because of the high cost and complications that can be associated with the disease, the National MS Society has long supported many of the policies that were included in the law just upheld by the Supreme Court. With guidance of people living with MS, the Society adopted a set of National Health Care Reform Principles several years ago and, as an organization. Our approach is to support legislation that is in line with those principles. We intend to continue to work with Congress and the Administration in pursuit of public policies that address the needs of those impacted by MS. Contact For assistance with specific health insurance questions, people with MS, their families or healthcare providers may speak with an MS Navigator by calling 1-800-344-4867 (FIGHT MS). You can find additional information on our website.

Just 2 days left

As you know, we need to raise $50,000 by June 30 to fulfill our promise to fund research efforts and provide services for people affected by MS. Right now we need your help. Will you give now and help us achieve our goal by June 30? There are more than 400,000 men, women, and children living with MS. They are counting on you today — and time is running out to help fuel this MS Research Revolution while also supporting: • Change through advocacy • Professional education • Programs and services to help people with MS live their best lives With your continued support, we will STOP MS in its tracks ... RESTORE the function taken by the disease ...and END MS forever. But we can’t do it without you. There are just two days left to fulfill this $50,000 goal. By giving a gift today, you can help move us closer to a world free of MS. Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. Please don’t wait. We are so close to our goal, but we need your help to raise $50,000 before June 30 — give your most generous gift today!

You can help - respond by June 30

An MS research revolution is under way. Right now, thousands of skilled scientists are working to STOP MS in its tracks ... RESTORE what’s been taken by the disease ...and END MS forever. But we need thousands more to join us. Your support will provide the vital dollars needed right now. We cannot and will not rest until we end MS forever. Our gift today not only funds cutting-edge MS research, you can also: • Drive change through advocacy • Support professional education • Fuel the programs and services that help people with MS and their families move their lives forward The time to act is now. Please give today so we can reach our $50,000 goal by June 30. Sincerely, Krista Asteriadis Byers Associate Vice President of Individual Giving National MS Society P.S. Every dollar you give supports people in your community facing the challenges of living with MS. Please don't wait. Help us raise $50,000 before June 30 — give your most generous gift today.

Educational Teleconference Programs 2012

Educational Teleconference Programs Don’t forget to register for these upcoming teleconference programs! Management and Rehabilitation of Advanced MS Dr Kraft will present a brief overview of advanced MS, current status of research and practical application of symptom management. Speaker: George H. Kraft, M.D., M.S. Director of the Western Multiple Sclerosis Clinical Center and Alvord Professor of MS Research; Professor, Rehabilitation Medicine and Neurology at the University of Washington in Seattle Date: Wednesday, July 18, 2012 Time: 6:30 – 7:30 p.m. REGISTRATION DEADLINE: Wednesday, July 11, 2012

Call your Senator and Representative today to increase consumer access to MS biologics

Massachusetts is the only state that prohibits consumers from accessing pharmaceutical assistance. This prohibition is preventing many individuals with MS from taking their medications because they cannot afford expensive co-payments. The Greater New England Chapter has been actively seeking to remove this prohibition for the past four years- WE NEED YOUR VOICE NOW!! Current issue status Language has been introduced by the House and the Senate to the fiscal year 2013 budget that would lift the ban against prescription drug coupons. But the Senate language contains very stringent requirements that could prevent consumers from accessing coupons and financial assistance programs in the Commonwealth. This language is commonly known as “ The Coupon Bill”. Take Action ACTION 1. Identify your state Senator and Representative. Go to: www.wheredoivotema.com ACTION 2. Contact your state Senator and Representative immediately at 617-722-2000 and ask them to contact the fiscal year conferees to support House Budget Sections 163-163C to secure language that would lift the ban against financial assistance for prescription drugs in the fiscal year 2013 budget. Talking points My name is: ______________________ I am a voter in your district. I am calling in support of House Budget Sections 163-163C, which would add prescription drug coupon language to the fiscal year 2013 budget. • Massachusetts is the only state that maintains a ban on prescription drug coupons. • Individuals with MS rely on highly specialized – extremely expensive – biologic medications that have no generic alternative. • Allowing Massachusetts residents to take advantage of manufacturer discounts does not cost the Commonwealth a dime. • The Senate language could preclude consumers from accessing coupons and financial assistance. I ask that the Senator /Representative support House Budget Sections 163-163C and contact their respective conferees to urge their support. Will she/he do so? I can be reached at _________________ (provide telephone #) if my Senator /Representative has any questions. ACTION 3. Please click reply to this email and let the Greater New England Chapter know if your Senator and Representative will support this action. Thank you and please support our efforts to manage chronic disease and keep Massachusetts’ residents healthy. An update will be sent to you regarding the outcome of this important call to action.

Not too late to register for Men With MS program!

Join us for a unique opportunity to explore issues related to being male and having MS. It is not too late to register for Men With MS: Facing Challenges, Finding Solutions Date: Saturday, June 16, 2012 Time: 10:00 am – 2:00 pm (lunch and entertainment included) Location: Holiday Inn Portsmouth, 300 Woodbury Ave., Portsmouth, NH Our featured speaker is David Rintell, Ed.D. Dr. Rintell is a psychologist who has worked with people with MS and their families for over 25 years. Register today! This program is for men only. By Phone: 800-344-4867 Online We look forward to seeing you!

Urge Senator Kerry to Hold a Hearing on Important Rights Treaty

n 2009, the United States signed a treaty called the Convention on the Rights of Persons with Disabilities (CRPD) which essentially takes the Americans with Disabilities Act international. In order to have the force of law, the U.S. Senate must ratify it by a two thirds majority. The Obama Administration has now submitted the CRPD to the U.S. Senate to begin the ratification process. Before the Senate can vote on the CRPD, the convention needs to pass through the Foreign Relations Committee with a simple majority vote. The next step towards ratification is a hearing in the Foreign Relations Committee. One of your U.S. Senators, John Kerry, is the Chairman of the Foreign Relations Committee and has the authority to schedule a hearing. Our request is very simple –please contact Senator Kerry by phone (202-224-4651) or by email by clicking here. If you call Senator Kerry’s office, please urge him to schedule a June hearing for the Convention on the Rights of Persons with Disabilities. If you click to send an email, you will be prompted to enter your zip code and then an email will appear for you to easily send to Senator Kerry’s office. The CRPD package that the Obama Administration submitted to the U.S. Senate is consistent with U.S. laws and will not require additional appropriations. Ratification of this treaty ensures that people with disabilities, including people living with MS, have equal rights and extends disability rights globally. Thank you for your help!

Call your representative to support "chronic disease management"

Dear MS Activist: Please call your state representative today to urge their support for Amendment #262 to amend House Bill 4127, An act improving the quality of health care. Background House Bill 4127, also known as the health reform bill, is close to passing the legislative process and going to Governor Patrick for enactment. The bill includes language for the creation of a “Prevention and Wellness Trust” which does not include a focus on chronic disease management so critical for those living with conditions such as multiple sclerosis. The Greater New England Chapter seeks to expand the focus of this Prevention and Wellness Trust and has secured sponsorship of an amendment #262 which would add new language to include chronic disease management. Recently MS Activists took action to include this language in the Senate bill. Your voice was heard!! The Senate adopted this language in their version of the bill. Take Action Now! If you do not know who your state representative is check www.wheredoivotema.com Call 617-722-2000 to ask for your state representative's office (not email) Provide your name and identify yourself as a constituent Ask your representative to support Amendment #262 to House Bill 4127 and ask them to urge Speaker Robert DeLeo to do the same. Thank you for your willingness to support Amendment #262 on behalf of persons with multiple sclerosis!

Federal Focus - June 2012

House Approves $5 Million for MS Research in the CDMRP In mid-May, the U.S. House of Representatives approved its Fiscal Year (FY) 2013 Defense Appropriations bill that included $5 million for MS research in the Congressionally Directed Medical Research Programs (CDMRP). If this level is maintained as the process moves forward, it would be an increase of $1.2 million in comparison to FY 2012’s funding level ($3.8 million). Each year, MS activists ask Congress to provide MS research funding in the CDMRP. Over the past five funding cycles, more than $20 million in total has been dedicated to MS research. At the Society’s 2012 Public Policy Conference in March, MS activists made the initial request, urging their federal lawmakers to support $10 million for MS research in FY 2013. Following the conference, Representatives Michael C. Burgess (TX-26) and Russ Carnahan (MO-3) authored a letter that was supported by 66 of their House colleagues. The request, $10 million for MS research in the CDMRP, was sent to the House Appropriations Committee. As a result of persistent activism, it’s clear that the House members understood the value of continuing MS research funding even in a time of austerity. We could not have done this without all of YOUR help—thank you! The annual federal budget process still has many steps before it’s finalized. The Senate has not yet acted on its Defense bill that could contain CDMRP funding. In that chamber, Senators Sheldon Whitehouse (RI) and Mike Johanns (NE) along with 10 other Senators went on record supporting MS research in the CDMRP. As the Senate deliberates over its bill, the Society will continue to educate Capitol Hill about the importance of maintaining MS research initiatives and to advocate for the maximum funding for MS! International Treaty to Recognize Rights of People with Disabilities Before the U.S. Senate The Obama Administration recently transmitted the Convention on the Rights of Persons with Disabilities (CRPD) to the United States Senate. The United States signed the treaty in 2009, but in order for it to have the force of law, the Senate must ratify it by a two thirds majority. The CRPD essentially makes the Americans with Disabilities Act (ADA) an international standard, ensuring that Americans with disabilities who work and travel abroad, including disabled American veterans, are protected from discrimination. The treaty also helps ensure that all Americans enjoy the same rights outside the U.S. as they are afforded at home. Last week, seven bipartisan Senators indicated their support to ratify the CRPD—providing critical progress that will help advance the treaty. We are grateful to Senators McCain (AZ), Durbin (IL), Moran (KS), Harkin (IA), Barrasso (WY), Coons (DE), and Udall (NM) for this support. Now that the CRPD has been transmitted to the Senate and is receiving bipartisan support, the Society and coalition partners are urging the Senate Foreign Relations Committee to hold a hearing soon on this important treaty. This would keep up the momentum and hopefully lead to quick passage.

Call your senator today to increase consumer access to MS biologics

Massachusetts is the only state that prohibits consumers from accessing pharmaceutical assistance. This prohibition is preventing many individuals with MS from taking their medications because they cannot afford expensive co-payments. Language has been introduced into the legislature that would allow patients to access all forms of coupons, rebates and pharmaceutical company assistance programs, commonly known as “The Coupon Bill”. The Greater New England Chapter has been actively seeking to remove this prohibition for the past four years-we need your voice now!!. Click here to view Joan’s compelling story Current issue status Although bills were filed this session to remove the prohibition, the language was added to the FY’13 House budget but not to the Senate version. Senator Michael Rodrigues filed Amendment #655 in an effort to secure the opportunity for Massachusetts residents to take advantage of prescription drug coupons. Take Action Contact your state senator immediately (no later than Wednesday afternoon since the senate will begin voting Thursday) and request their support of Amendment #655 ACTION #1. Identify your State Senator. Go to: www.wheredoivotema.com ACTION #2. Contact your State Senator at (617) 722-2000 and ask your senator to contact the office of Senate President Therese Murray to support Amendment #655 to Senate Bill 4 to secure prescription drug coupon language into the fiscal year 2013 budget. Talking points My name is: ______________________ I am a voter in your district. I am calling in support of Amendment #655 to Senate Bill 4, which would add prescription drug coupon language to the fiscal year 2013 Senate budget. • Massachusetts is the only state that maintains a ban on prescription drug coupons. • Individuals with MS rely on highly specialized – extremely expensive – biologic medications that have no generic alternative. • Allowing Massachusetts residents to take advantage of manufacturer discounts does not cost the Commonwealth a dime. Ask your Senator to 1) vote in support Amendment #655 and 2) contact Senate President Murray to urge her support. I can be reached at _________________ (provide telephone #) if my senator has any questions. *Action Alert members - an update on your action will be sent soon to you. National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

Can Do Multiple Sclerosis/One Day Jumpstart Program

Join us in an educational and interactive program in which you and your support partner gain the knowledge, skills and tools needed to adopt healthy lifestyle behaviors and actively co-manage your MS. Presentations and Workshops will include the topics of nutrition, physical activity, managing your healthcare and a support partner workshop. This is offered at no charge and does include lunch. June 2, 2012 – Four Points Hotel, Norwood, Massachusetts June 3, 2012 – DoubleTree Hotel, Portland, Maine Register today, programs are filling quickly. To register online, go to www.mscando.org/JUMPSTART, or call Can Do MS, Mel McKinney at 800-367-3101, ext. 1281. We look forward to seeing you! National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

MS Action Alert

Dear MS Activist: Please call your state senator today to urge their support for Amendment #14 to amend Senate Bill 2260, An act improving the quality of health care. Background Senate Bill 2260, also known as the health reform bill is close to passing the legislative process and going to Governor Patrick for enactment. The bill includes language for the creation of a “Prevention and Wellness Trust” which does not include a focus on chronic disease management so critical for those living with conditions such as multiple sclerosis. The Greater New England Chapter seeks to expand the focus of this Prevention and Wellness Trust and has secured sponsorship of an amendment #14 which would add new language to include chronic disease management Take Action Now! If you do not know who your state senator is check http://www.wheredoivotema.com Call 617-722-2000 to ask for your state senator's office (not email) Provide your name and identify yourself as a constituent Ask your senator to support Amendment #14 to SB2260 and ask them to urge Senate President Murray to do the same Thank you for your willingness to support Amendment #14 on behalf of persons with multiple sclerosis! National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org