Greater NeW eNGLaND CHaPter MOVING TOWARD A WORLD FREE OF MS WINTER …s3images.coroflot.com/user_files/individual_files/274257... · 2011. 12. 20. · MOVING TOWARD A WORLD FREE

MOVING TOWARD A WORLD FREE OF MS WINTER 2011

Greater NeW eNGLaND CHaPter

MS Awareness Week March 12-18, 2012

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Annual Meeting of Memberspage 3

Family caregiver honorpages 4

Pregnancy and MS page 14

cycling Across Americapage 18

Inside MS connection:

2 JOIN THE MOVEMENT: MSnewengland.org

The National MS Society Welcomes a New President & CEOOn October 1, the National MS Society welcomed a new President & CEO, Cyndi Zagieboylo. The Greater New England Chapter embraces Cyndi with an open heart and great expectations for continued success and growth.

Joyce Nelson, the Society’s President & CEO for the last seven years, retired at the end of fiscal year 2011. Joyce’s 28 years of service to the National MS Society were truly exemplary. Her leadership charted a bold course that produced great results, and positioned our organization well for the present and future.

Cyndi Z, as she’s known around the Society, has an impressive 25-year tenure that started here at our Chapter, when we were only Massachusetts. Her first position was Director of Support Services working directly with people with MS, and with healthcare professionals and the community. From there, she moved to Area Director in the Southeast and Northeast, working on Walk, Bike, and other major events, plus financial analysis, mission delivery, and board engagement.

As Vice President for Chapter Programs, Cyndi shifted her focus nationwide to vastly improve the Society’s program delivery structure. In this role, she ensured the Society grew to be a strong chapter-driven organization. As Chief Field Services Officer, her most current position, Cyndi was crucial in establishing the new regional structure that enables collaboration among chapters. Further, she played a key role in the Society’s 2011-2015 strategic response to MS as a member of the core strategy and implementation team.

In selecting a new leader, the National MS Society Board of Directors looked for someone who could build on the strengths and extraordinary successes we achieved together. Someone who could bring people together from across the MS movement to fuel the necessary growth and innovation needed to realize a world free of MS.

“Cyndi knows the National MS Society inside and out, and is perfectly positioned to become the National MS Society’s next CEO,” said Tom Kuhn, National Board Chair and Search Committee Member. “Her vast experience from chapter to regional to national leadership, and her strategic thinking and results-driven track record speak to her strengths as a leader.”

It’s a matter of pride for me personally to see someone from our Chapter grow to become the President & CEO of the National MS Society. Coincidentally, one of our Chapter Trustees, Eli Rubenstein, has been elected Chair of the Society’s National Board of Directors. A long-serving and insightful Chapter Trustee, Eli’s talents will add great value to the National Board. I have every confidence that together, Cyndi’s and Eli’s leadership will continue advancing the movement to create a world free of MS at an increasingly strong pace. Please join me in congratulating them both.

Arlyn White President & CEO

Publication of the National Multiple Sclerosis Society Greater New England Chapter

101A First Avenue Waltham, MA 02451-1115 1-800-344-4867www.MSnewengland.org

Chairman • Robert Shapiro Chapter President & CEO • Arlyn A. WhiteMSConnection Editor • Steven R. Sookikian Publications Manager • Wendy Golden

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The NMSS assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The NMSS recommends that all questions and information be discussed with a personal physician. The NMSS is dedicated to mobilizing people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

If you or someone you know has MS — studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at www.nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

© 2011 National Multiple Sclerosis Society, Greater New England Chapter

From the President

Moving Toward a World Free of MS

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top Stories

Stanley F. Waterman Research Series More than 500 people attended the 2011 Annual Meeting of Members, which included workshops, research updates, and an exhibitors fair. The Stanley F. Waterman Research Series included a speaker in each state.

•Mayo Clinic Neurologist and Researcher Dr. Brian Weinshenker spoke in Marlborough, Massachusetts and highlighted the advances made towards diagnosing and treating a rare form of MS, known as Neuromyelitis Optica.

• John DeLuca, PhD, ABPP of New Jersey Medical School, addressed members in Portland, Maine on how cognition and fatigue are affected by MS.

• carolina Ionete, MD, PhD, uMass Medical Center MS Clinic, was in Meredith, New Hampshire and discussed a new treatment option for secondary progressive MS.

• Angela Applebee, MD, Director of the MS Center of Northern New England, spoke in Burlington, Vermont about the clinical trial process and treatments in the pipeline.

Two New Chapter TrusteesDuring the Annual Meeting of Members, two new Chapter Trustees were elected to the Board: Brandon kelly, President, R.J. Kelly Company, and Liam kennedy, Vice

President Finance, Bain Capital, Boston. Kelly has been a supporter for many years and his company was honored at the 2011 MileStones Gala. Kennedy is captain of one of the largest Bike MS teams in the chapter, liam’s lucky Charms, riding in the Cape Cod Getaway.

The Board elected the following slate of officers for 2012: Chairman: Robert Shapiro. First Vice Chair: Douglas Bryant. Vice Chairpersons: Woody Chittick, Mary Jalbert, Piper McNealy, and Eli Rubenstein. Clerk: Joan Kaplan. Treasurer: David Gladstone. Assistant Treasurer: Michael Mingolelli. And, Immediate Past Chair: Eli lipcon.

Several Chapter Trustees also have significant leadership roles at the national level. Eli Rubenstein, a member of the Society’s National Board of Directors, began serving as the National Chairman. Dan Rattner also became a National Director, joining Richard Slifka and Peter Galligan on the Society’s Board. And, Woody chittick was recently named Chairman of the Northeast Region leadership Advisory Council, and was appointed to a seat on the National leadership Council.

This year, three Chapter members were inducted into the Society’s Volunteer Hall of Fame: Barbara Green, captain of The Green Team of Walk MS Cohasset, ken Jones, a Chapter Trustee and a leader in MS advocacy, and Dr. Peter Riskind of uMass Memorial Medical Center, and Chair of the Chapter’s Clinical Advisory Committee.

Fundraisers Going Beyond the Call of Duty

Elite fundraisers, who raised at least $19,000 during fiscal year 2011 ($1 for each person with MS in our Chapter) were welcomed into the Mission Possible Club during the Annual Conference. Seven people achieved that level or higher: Susan Martin, liam Kennedy, Eli lipcon, Ron Joseph, Sumner Weeks, Pamela littell, and David Parker. Top fundraising teams from Walk MS, Bike MS, MS Challenge Walk, and Marathon Strides Against MS were also recognized. For a complete list of all the top fundraising teams, visit MSConnection online at MSnewengland.org.

The Promise of NOW: Annual Meeting of Members Conference & EXPO with Stanley F. Waterman Research Series

Saturday, October 29, 2011 Portland, ME, Marlborough, MA, Meredith, NH and Burlington, VT

From left: Jane Waterman, Elise Waterman, Lynn Stewart, Robert Shapiro, Dr. Brian Weinshenker, Dr. Peter Riskind, and Dr. Linda Buchwald


News

PIcTuRING DISABILITYby DoNNa FeLLmaNTwenty years ago, in August 1991, when my children were six, four, and 11 months old, I was diagnosed with MS. My youngest child, Kaija, was taking her first steps while I was losing the ability to walk. I used a cane, but soon needed crutches, and by the time Kaija was two, I was using a wheelchair most of the time.

last year, in a college photography class, Kaija was given the assignment to do a photographic essay. She chose “Disability” as the subject and framed images that showed her development as a little girl with portrayals showing the progression of my disability. There is a photo of her little shoes with my cane, representing her learning to walk alongside my difficulty walking. Included is a sequence of shoes to illustrate her growing up, my mobility aids, our legs together, her self-portrait in a wheelchair, and other images depicting her memories and perceptions of disability.

We talked about what it was like for her and her brothers growing up. looking at her little red shoes, I said to Kaija that I had never held her hand and walked with her.

Her reply: “I always had your lap.”

Donna Fellman lives in rural Maine.

Pediatric MS Studies Receive Federal Support The Society’s network of Pediatric MS Centers has been awarded a five-year grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched controls without MS for a single visit to one of 10 centers around the country—in California, New York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email [email protected] or call 415-514-2476. For more information about pediatric MS, visit www.nationalMSsociety.org/pediatricMS.

Madeline Russell of Medford receives Mass. Family Caregiver HonorMadeline Russell of Medford was recently honored by the Commonwealth of Massachusetts during Family Caregivers Month of November for her role as primary caregiver to her husband, Jimmy, who recently passed away due to complications from multiple sclerosis. Madeline’s story is one of exceptional selfless giving. She and James, who was diagnosed with MS in 1964 when he was 13 years old, were reacquainted at their 25th High School Reunion. Their 2003 wedding plans were put on hold because Jimmy fell into a coma. After 35 days he awoke, and he and Madeline were married in the Intensive Care unit at Mount Auburn Hospital in Cambridge, Mass. Together, Jimmy and Madeline dealt with a variety of severe medical needs until he passed away in September. Madeline’s love and care for Jimmy never wavered. There are many more family caregivers who, like Madeline, persevere through difficult and often dramatic situations, without recognition or reward.

(L-R) Michelle Dickson, Advocacy Director, Madeline Russell, Family Caregiver Award Recipient, and Virginia Morse, Advocacy Coordinator.


Moving Toward a World Free of MS Newly Diagnosed

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. mail or email formats. to register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.

JOIN ThE MOVEMENT®

Taking the Next Step After DiagnosisIt’s hard to predict what a future with MS will hold. But MS Next Step® helps people take their “next step” toward getting the information and support they want and need after diagnosis.

Intended to be given to people at the moment of diagnosis, MS Next Step® is a primer on what to expect. This new program produced by the Society includes a booklet and DVD with a short video (closed captioning in English and Spanish, and print transcripts are also offered). The materials cover what MS is, including possible causes, how it is treated, and some of the life challenges a person with MS may face early on, such as disclosure. There is guidance on where to go for more information, and a description of what the Society offers.

hearing the diagnosis of multiple sclerosis is never easyWhether the symptoms that brought you to the doctor are relatively new or you have been searching for answers for quite some time, the words multiple sclerosis can be very frightening.

MS Next Step® is designed to answer questions that are commonly asked immediately following a diagnosis. If you

are just beginning your search for information about MS; wondering how the diagnosis may affect you; or considering issues like disclosure, treatment strategies and working with your health care team...MS Next Step® is for you.

MS Next Step® includes:• A printed booklet to introduce you to MS, common

concerns and helpful resources

• A DVD including interviews with people who have learned to live well with MS who provide perspectives relevant to people newly diagnosed

• Electronic files, in PDF format, of the booklet content and video transcripts, all included on the DVD

• Spanish translations of the booklet and transcripts are also available on the DVD. Spanish subtitles are available for the video content.

If you are newly diagnosed and would like to receive a copy of MS Next Step®, please request your copy at 1-800-344-4867 or [email protected]. If you did not receive a copy from your doctor and would like to let him/her know about this program, please let us know.

For individuals who have already developed a basic knowledge of MS, Knowledge is Power is an ideal way to add to your knowledge and learn how to live even better with MS.

Can We Talk?Newly Diagnosed Conference Calls

For people diagnosed within the last five years, call a toll free number to hear from experts about various topics of interest to those recently diagnosed with MS. live Q&A session held during each call – get your own questions answered!

held the first Tuesday of the month from 7-8 p.m.

April 3: Ask the Doctor

May 1: But You look So Good: The Invisible Symptoms of MS

Eligibility: Person with MS must have been diagnosed within the last five years, their adult family member/friend may also register. Must register in advance to participate.

For more information about this program please call 1-800-344-4867 or email [email protected]


Programs

Live Fully, Live Well – The Holistic Approach to MS

Get the latest!Visit www.nationalMSsociety.org/signup to sign up for monthly MS eNEWS.

help is a Phone call Away1 800 344 4867

No matter where you live, if you have questions about multiple sclerosis, an MS Navigator at the National MS Society’s Information & Resource Center can help you. Find resources for all of the following, and much more!• REFERRALS to Neurologists,

MS Clinical Centers, legal Services, Mental Health Providers, Allied Health Professionals, and Housing Needs, Self-Help and Support Groups

• RESOuRcES for Medical Equipment, Home Modifications, Transportation, Independent living, Financial Assistance

• PROGRAMS in Home Care and Day Care, Recreation and Wellness

• cOuNSELING for Employment Issues, Insurance, and Public Benefits

You may submit a request by e-mail ([email protected], please include your name, mailing address, and phone number), or by calling us toll-free at 1-800-344-4867, Monday through Friday, 9 a.m. to 5 p.m.

?Do you have SSDI Questions???The Chapter is very excited to be working with a new volunteer who has years of experience with SSDI. She has offered to answer questions from people with MS. To check in with our SSDI “expert,” please call 781-693-5155. We are scheduling phone consultation appointments.

High school seniors who have been diagnosed with MS or who have a parent with MS are eligible for the Society’s scholarship program. Awards range from $1,000-$3,000; a small number of four-year awards are offered. Applications for 2012 scholarships will be accepted (online only) until January 13, 2012. For more info, visit nationalMSsociety.org/scholarship or call us at 1-800-344-4867.

2011 was a record year for the Society’s ever-expanding scholarship program: over $1 million in new awards and renewals were granted to recipients such as Presidential Scholar Rebecca Merlenbach, diagnosed with MS at age 15, and Mike Dugan Scholar Breanna Burkes, determined to become a neuroscientist to stop the disease that affected her mother.

A large part of the support that keeps the scholarship program helping students like Rebecca and Breanna comes from individual donors. To find out how you can help, visit nationalMSsociety.org/scholarship and click “Support the Program.”

Jared Applebaum plans to study aerospace

engineering.

MS Scholarships

A new multimedia wellness program, a collaboration between the Society and Can Do MS, launched this June. Called live Fully, live Well, it is designed for people with MS and their support partners, and deals with a wide range of topics covering health, relationships and quality of life. live Fully, live Well offered in-person workshops, videos, and monthly webinars presented by physical and occupational therapists, MS nurse educators, dietitians and other MS experts. The webinars are archived on the National MS Society website and can be accessed at any time. All the subsequent webinars will be available on the Society’s website shortly after the program’s air date. For details and schedules from August on, log on to www.nationalMSsociety.org and search for “live fully live well.” To register for future in-person workshops, call can Do MS at 1-800-367-3101, or email [email protected].



Programs

Educational Teleconference Series 2012Join us from the comfort of your phone for a year of informative conference calls on a diverse range of topics for people living with MS. This educational series is free and 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. All calls are 6:30 - 7:30 p.m.Sign up online at www.MSnewengland.org

Tuesday,January 24, 2012

Where is My Memory? cognitive changes in MS

learn about cognitive issues in MS and its impact on everyday life. Tools to help you manage and adapt to cognitive symptoms are also explored.

Speakers: * John DeLuca, PhDVP for Research, Kessler Foundation Research Center, Professor in Physical Medicine & Rehabilitation and Neurology and Neuroscience at the university of Medicine and Dentistry of New Jersey * Jeffrey GingoldPerson living with MS and author of “Facing the Cognitive Challenges of MS” and “Mental Sharpening Stones.”

Thursday,March 15, 2012

Emerging Therapies for MS Treatment

The emergence of new MS therapies is exciting and challenging for people living with MS and the clinicians who treat them. An MS neurologist will discuss emerging MS therapies to promote a better understanding and educate you about treatment options.

Speaker: * Stephen krieger, MDCorinne Goldsmith Dickinson Center for MS at Mount Sinai Medical Center, New York, NY

Thursday,May 3, 2012

using Assistive Technology

learn about a variety of assistive technologies that enable people living with MS to function better at home and work. Resources that might be available in the community for funding equipment are also addressed.

Speaker: * Mark Surabian Assistive Technology Practitioner, Pace university, NY and owner/creator of web-based resource Cognitechcafe.com

SAVE THE DATE:Saturday, March 31, 2012

Mapping Your Way to Wellness, Discover the Route to Living

Your Best Life! Spring Educational Conference with the New Hampshire MS Clinic,Church landing, Meredith, NH

Join us for a day at the New Hampshire MS Clinic exploring all the dimensions of health and well-being with MS.

MS Encompass - Get Fit!This program is a collaboration between the chapter

and the YWCA of Central Massachusetts in Worcester.You must register through the chapter, giving you access to

the indoor pool, strength training, cardio equipment and aerobics classes. Handicapped accessible weight training equipment is available.

YWcA of central Massachusetts, Worcester Ongoing during YWcA’s hours of operation

$10 per month


Programs

MS and Wellness A training for wellness professionals who have an interest in working with people with multiple sclerosis in their practice. Physical wellness is important for people living with this chronic disease and the National MS Society aims to increase the number of wellness professionals prepared to work with people with MS.Space is limited. Advance registration is required.

Saturday, January 28, 2012, 10 a.m.-1 p.m. curtis Memorial Library 23 Pleasant Street, Brunswick, Maine

To register or questions: contact Heidi Eastman207-862-2148 or [email protected]

Wellness Scholarship ProgramScholarships are available through our chapter for yoga, tai chi, aquatics and fitness instructors. To take advantage of their expertise, or to find out about instructors in your area, visit our website, >Programs & Services>In Your Community>Physical Wellness

Ask the ExpertsThe Chapter provides access to experts who shed light on a wide range of issues, including diagnosis, symptom management, treatment, living with MS, genetics and family matters. Visit us at MSnewengland.org.

In Touch Phone GroupsThese professionally facilitated phone support groups meet monthly. listen, learn and talk to other people with MS from the comfort of your own home. For those who cannot attend a traditional support group. Pick one of three groups:

• Third Monday/month with Denise Riel, lICSW 11 a.m.–Noon

• Second Tuesday/month with Allison Troy, lICSW, Noon–1 p.m.

• First Wednesday/month with Caitlin Dionne, RN 2–3 p.m.

Self-Help GroupsFor people with MS, run by people with MS. Members share common experiences and concerns, provide and receive emotional support, and obtain information on living and coping with MS. To find a group in your area, visit MSnewengland.org.

Relationship MattersHaving a satisfactory relationship is hard work even in the best of times. MS can make it even harder. The Relationship Matters program is a series of interactive courses that exists to help couples minimize the impact of MS on their lives. learn how to:

• Improve communication and resolve conflicts• Manage MS as a team• Have greater fulfillment in your relationship• Help your relationship thrive

For information or to register, [email protected]

Keep S’myelin is published quarterly by the National MS Society for children 5 - 10 years old and their relatives who have MS. Games, fun and information. To sign up, call the chapter or email: [email protected].

MS Learn OnlineFree webcasts, podcasts, and online conferences. Visit the Multimedia library at nationalMSsociety,org.

Living with MS Support GroupFor people who have been diagnosed with MS for more than five years and/or those who may have significant or visible symptoms. Meet and share information and resources in a comfortable and supportive environment. Confidential setting to discuss feelings, voice concerns, and learn how to better cope with the impact of the disease. Facilitated by a licensed psychologist, Dr. Amy Fowler.

First Thursday of each month, 10:30-11:30 a.m.Northampton, MA

Register: Dr. Fowler at 413-582-3908

Caregiver Support GroupFree MS caregiver support group offers an opportunity for friends and family caregivers to meet and share information and resources. Confidential setting for caregivers to discuss feelings, voice concerns and learn how to better cope with the impact of the disease. Facilitated by licensed psychologist Dr. David Rintell.

Fourth Thursday of each month, 5-6:30 p.m. MetroWest Medical Center, 115 lincoln St., Framingham, MA

Register: David Rintell, EdD at 617-525-6586

Moving Toward a World Free of MS research

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STRESS AND MS A new study suggests that stress does not appear to increase the risk of developing MS.

The study, published in Neurology, May 31, 2011, focused on two large groups, totaling almost a quarter million women, from the Nurses’ Health Study, which has followed a large number of female nurses for decades. The nurses were asked to report on general stress at home and at work, and also any physical or sexual abuse as children or teenagers.

The investigators compared the answers between those nurses who had developed MS and those who had not. They also took into account age, ethnicity, smoking habits and other variables that have been linked to an increased chance of developing MS.

The researchers found that those who later developed MS had not responded significantly differently from those who had not developed MS. Although this sounds persuasive, more research is needed to definitively exclude stress as an MS risk factor.

VITAMIN D IN AFRIcAN-AMERIcANS WITh MSResearch increasingly points to low levels of vitamin D in the blood as a risk for developing MS. A new study, www.neurology.org/content/76/21/1824, funded in part by the National MS Society, does show that African-Americans with MS have lower levels of vitamin D than African-Americans who don’t have MS.

Researchers Jeffrey Gelfand, MD, Ari J. Green, MD, and colleagues at university of California, San Francisco, found that of the group with MS, 77% were deficient in vitamin D, compared to 71% of those without MS. The study, based on examining 339 African-Americans with MS and 342 without the disease, found no link between vitamin D levels and how severe the disease was.

African-Americans in general have an increased risk for low vitamin D levels, possibly because their skin has large amounts of melanin, which acts as a filter of ultraviolet light. This in turn limits how much vitamin D the body can produce. Study participants with a higher proportion of European genetic ancestry were less likely to have low vitamin D levels than

participants with a lower proportion of European ancestry.

The risk of MS in African-Americans is about half that of Caucasians. However, the same researchers previously reported that African-Americans tended to have a more aggressive course of MS than Caucasians, a higher risk for mobility impairments, were more likely to develop MS later in life and were at higher risk for symptoms in the optic nerve and spinal cord.

A LINk TO hERPES? Viruses are well recognized as causes of nervous system damage and inflammation, so it is possible that a virus may set off MS. Various types of evidence point in particular to an association between MS and Epstein-Barr, a herpes virus that causes infectious mononucleosis and other disorders. Now, a new study hints at another possible link, this time between herpes zoster and MS.

Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster—which usually shows up as the skin rash known as shingles—were more than three times as likely to develop MS over the next year than individuals who did not have an attack. The study, reported in The Journal of Infectious Diseases (6/7/2011), used a large data set of Taiwanese people. However, since people of Chinese genetic background are at lower risk for MS than Caucasians, the researchers do not know yet if this finding will translate to other populations.

FLu ShOT, OR NOT?Flu season brings not just coughs and sniffles, but the question: Get a flu shot, or not?

Because there is a much higher risk of an MS relapse due to flu than to the flu vaccine, the Society generally recommends that people with MS get the shot. The injectable flu vaccine—which is an “inactivated” vaccine—has been studied extensively in people with MS and is considered quite safe. It may be taken by people on an interferon medication, glatiramer acetate, or mitoxantrone. It is not yet clear if the vaccine is as effective for those talking natalizumab or fingolimod.

It’s best to delay vaccination for four to six weeks after the onset of any serious exacerbations. People with MS should avoid FluMist, a live-virus flu vaccine (sometimes called lAIV for “live attenuated influenza vaccine”) delivered via nasal spray. For more information, go to www.nationalMSsociety.org/vaccinations.


research advocate

RESOuRCES TO FIND CLINICAL TRIALS •ClinicalTrials.gov •CenterWatch - www.centerwatch.com •www.mscare.org/cmsc/CMSC-NARCOMS-Information •MS-CORE - www.ms-core.org •www.msif.org/en/research/clinical_trials •CISCRP - www.ciscrp.org •ResearchMatch.org - www.researchmatch.org

Dr. Linda BuchwaldResearch Advocate

Did you know there are now 130 ongoing, planned, or recently completed MS clinical trials? These studies are bringing new hope for oral drugs, better options for people with Progressive MS, and novel approaches to alleviating symptoms. Disease-modifying drugs and procedures represent possible interventions to modify the natural course of the disease (instead of targeting symptoms or recovery from relapses).

Over a dozen Phase III clinical trials testing potential therapies are underway, and new treatments are being devised and tested in animal models. About one-third of experimental medications for MS reach Phase III trials that take several years and involve large patient groups. They are the definitive evaluation of effectiveness and safety. Following a positive Phase III trial, a treatment is submitted to the u.S. Food & Drug Administration (FDA), which is responsible for approval. Many treatments currently in clinical trial involve drugs used in other diseases, or have not been designed specifically for MS. There are also trials that combine drugs already in use for MS.

Two Phase III clinical trials for MS (‘DEFINE’ and ‘CONFIRM’) reported positively in October. Biogen Idec announced the experimental oral therapy BG 12 significantly reduced the average number of annual MS relapses in the two-year DEFINE Phase III trial of more than 1,400 people with relapsing-remitting MS (RRMS). Full details and evaluation of this study should help further define safety and effectiveness. Biogen Idec says these results set the stage for upcoming filings for FDA approval.

An oral formulation of a BG 12-like drug has been approved for use in Germany for treatment of psoriasis (an auto-immune disease) for about two years, offering extensive experience with long term safety. Availability of long term safety data distinguishes

this drug from Gilenya, teriflunomide, and laquinimod.

Another drug, oral teriflunomide (Sanofi-Aventis), related to a drug used in rheumatoid arthritis, reduced the average number of MS relapses in a year significantly more than inactive placebo in a study of 796 people with relapsing MS. The therapy also reduced the volume of tissue damage and active areas of damage in those taking teriflunomide, compared to placebo after a two-year trial. The complete TEMSO study results are in The New England Journal of Medicine (2011;365:1293-303). These are the first Phase III results of oral teriflunomide for treating relapsing MS. These and results from additional Phase III studies now underway should help define the short-term safety and promise of teriflunomide. The long-term impacts, benefits, and potential adverse events are still to be determined.

laquinimod—related to Roquinimex (linomide)—has significant efficacy, but has significant safety concerns. Preliminary results of the Phase III AllEGRO study with 1,100 RRMS patients were presented at the American Academy of Neurology. laquinimod is found to be safe and well tolerated (gastro-intestinal side effects, back pain, insignificant liver enzyme changes). Phase III BRAVO study involved 1,200 patients with RRMS. It also compared the drug to placebo; progression and brain atrophy were reported.

The need for comparative trials is critical. As a general safety strategy, while new drugs offer attractive treatment options, switching for convenience should not be considered in the absence of long-term safety data and FDA approval. The risk of switching from one drug to another, for example from Natalizumab to an oral agent, may carry certain high risk concerns. And, patients using new oral drugs, when approved, will need careful monitoring.

looking forward, studies pertaining to apparent neuroprotective effects of new oral agents will be of great interest in regards to seeking strategies to achieve a true disease-free state.

* Lancet Neurology Vol. 10 November 2011

To find out about trials in the Greater New England states, visit www.nationalmssociety.org/clinicaltrialsGNE.

cLINIcAL TRIALS uPDATE

The Society’s annual list of clinical trials in MS is now available online at www.nationalMSsociety.org/clinicaltrials.

It features 130 studies that are in progress or recently completed. These cover neuro-protective agents; symptom medications; rehabilitation interventions such as cycling for improving MS-related depression, mobility and cognitive

function; and more.

More than 52,000 volunteers have participated or are currently participating in these studies. Their participation—and yours—makes it possible to look forward to new therapies for MS.

MS Treatments are Moving Through the Research Pipeline

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Advocacy

New ADA Rules

uP-TO-DATE FAQS ON THE AFFORDAbLE CARE ACTTo help people with MS understand the Patient Protection and Affordable Care Act (ACA) signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/AcAFAQ or call 800-344-4867

On this page, people can find answers to questions like: What if I am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out?

The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. In addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues.

As various provisions of the ACA kick in over the next few years, the Society will continue providing up-to-date information and links.

More than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of people living with disabilities.

The definition of “disability” had been selectively narrowed over the years. Now, the Equal Employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities, regardless if the disability is in remission.

Multiple sclerosis will almost always meet the “disability” criteria because MS limits

a major life activity (namely, neurological function).

The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices, polling places and emergency preparedness centers.

learn more at www.ada.gov. Also visit the ADA National Network at www.adata.org or call 1-800-949-4232 for information and training on how to implement the ADA in our area.

FEDERAl uPDATE uS SuPREME cOuRT WEIGhS IN ON ThE AFFORDABLE cARE AcTA conservative-leaning appeals court panel upheld the constitutionality of President Barack Obama's health care law, as the uS Supreme Court prepares to consider whether to resolve conflicting rulings over the law's requirement that all Americans buy health care insurance, beginning in 2014.

MAINELEGISLATIVE cOuNcIL APPROVES INTRODucTION OF SPEcIALTY TIER BILL

The chapter, in conjunction with members of the New England Coalition for Affordable Prescription Drugs, successfully urged the legislative Council to approve the introduction of new legislation that would prohibit the use of fourth or “specialty tiers” for prescription drugs that

would result in patients paying a percentage or “co-insurance” of the cost of drugs. If you are interested in supporting the passage of this legislation by providing testimony, contact [email protected].

SAVE ThE DATE: MARch 15, 2012

Join the chapter during MS Awareness Week at the Maine Statehouse to educate lawmakers about MS and the chapter’s policy priorities. More info to come!

MASSACHuSETTSLEGISLATIVE PRIORITIES

• S455 An Act Reforming Insurance Prescription Fee Practices Seeks to limit co-pay price tiers.

• h1557 An Act Promoting Accessible housing for Persons with Disabilities Intends to increase access to accessible housing with housing production and modification.

Wanted: MS “Grasstops”!Advocacy solutions for issues confronting people with MS require the National MS Society to build and maintain relationships with top community leaders, elected officials, and decision makers who can help us efficiently achieve our goals at the highest point of contact. A “grasstop” volunteer is a person who has a promising to significant level of connection with a local, state or federal legislator or official, an individual serving at a key government agency, or an influential staff person and is willing to leverage these connections to advance MS priorities. If you are an MS Grasstop, to you, please contact Ginny Morse at [email protected] or 781-693-5140.


Advocacy• h2352/h2383/S548 An Act

Relative to Prescription Drug coupons This bill amends the prohibition against offering rebates or coupons for use of certain medical devices or medicines to allow for the use of pharmaceutical discount programs. Two public hearings were held this fall and MS activists provided compelling testimony.

• S1246 An Act Relative to the Architectural Access Board Strengthens enforcement of the Architectural Access Board (AAB) with the Americans with Disabilities Act at the State and Federal levels.

POWER DOOR OPENERS

An amendment to require power door openers in the state building code, introduced by MS activists last July, is pending approval by the full Architectural Access Board. Passage requires hearings and approval of several agencies. Many thanks to MS activist Joann D’Amico Stone and Attorney Carol Steinberg.

NEW MASSAchuSETTS TRANSPORTATION cOMMISSION

The Commission for the Reform of Community, Social Service, and Paratransit Transportation Services, established by Governor Patrick’s Executive Order No. 530, seeks to improve and reform transportation. linda Guiod, Executive Vice President of Chapter Programs, Services, and Advocacy, was appointed to the commission.

hEATING/cOOLING REGuLATIONS

Chapter advocates are exploring overheating in apartment complexes.

NEW HAMPSHIRELIFESPAN RESPITE cARE SuMMIT

In October, Chapter Trustee and Respite Care Coalition member Ken Jones participated in NH’s first lifespan Respite Care Summit. The purpose is to learn about gaps in respite services and determine how to fill them.

MEDIcAID MANAGED cARE

If you are a Medicaid beneficiary with MS, share your experience to influence the state’s proposed model for managed care. Please contact [email protected].

VERMONTuNIVERSAL hEALTh cOVERAGE IMPLEMENTATION

A landmark bill was approved by the legislature last spring and the chapter will continue to weigh in on regulations and track implementation closely.

SAVE ThE DATE: APRIL 29, 2012

Join us at the State House for the annual MS Awareness event. Information to follow.

BANNING SPEcIALTY TIERING FOR PREScRIPTION DRuGS

last session MS activists took the lead on an amendment to S.104 to prohibit “specialty tiers” on prescription drugs that would result in costly co-pays. The approved final bill included a one-year moratorium on specialty tiers. Special thanks to Senator Sally Fox, who championed this issue. To testify in support of this bill, contact [email protected]

PuBLIc AccESSIBILITY IN DOWNTOWN BuRLINGTON

The Vermont GRC is seeking feedback from chapter members who have experienced barriers in accessing downtown Burlington’s famous Church Street marketplace. Contact [email protected] or 1-800-344-4867.

MS Activist BlogCheck out the latest federal news and share your views! http://msactivist.blogspot.com

Action AlertA little Time Makes a Big Impact!Become an MS activist and make your mark against MS.

1. Visit nationalMSsociety.org/get-involved/take-action/index.aspx

2. Take Action and sign up to receive federal and state alerts

3. Recruit a friend!

Government Relations committeeVolunteers Wanted!Are you a person with MS or have a connection to the disease? Do you have professional expertise in the area of law, medicine, disability, fundraising, policy, or community organizing? Do you have a commitment to working towards achieving short and long-term goals? Are you willing to speak before government officials, at public hearings, or with the media? Are you committed to working as a team and working on projects? If any of these describe you, contact [email protected]

We Did It!More than 23,900 people, from 143 countries, signed a petition that calls on employers and decision makers to remove the barriers that prevent people with MS from working.The petition was delivered to the uN High Commissioner for Human Rights in Geneva, and helps mark the fifth anniversay of the uN Convention on the Rights of Persons with Disabilities.


Moving Toward a World Free of MS Living with mS

WALk ThIS WAY: uSING WALkING POLES

Walking poles are potential tools in the walking arsenal that people with MS might want to consider. These are adjustable-length ski pole–like shafts made of very light metal (such as titanium, carbon fiber or aluminum) with handles (called grips). Many have adjustable wrist straps and tips designed for walking on flat, steep or rugged terrain. Because they are used in pairs, poles—which lie between a cane and a walker on the continuum of assistive devices—offer increased balance, steadiness and support,

according to Sue Kushner, PT, MS, associate professor of Physical Therapy, Slippery Rock university, Penn., who has spent much of her career working with people who have MS. “You can move a little faster, because bilateral support gives more stability and speed,” she said.

Studies suggest that poles reduce the force on joints and help distribute the body’s weight better, meaning less work for the legs, knees, feet, hip and back. less stress on the lower body translates into less fatigue, a frequent symptom of MS.

“If you use poles instead of a cane, you may conserve energy,” Kushner said.

Jayah Faye Paley grew up in Florida, and when she moved to northern California in her 30s, took up mountain hiking. She found she “didn’t have the natural footing of people who grew up with it.” She does not have MS.

One day she met a fellow using poles, who was, she said, “poetry in motion on the trail.” She was so taken with both him (they married in 2003) and the poles that she made a career of teaching people to use them optimally. An ACE-certified personal trainer, Paley has created two training DVDs, including one for people with mobility challenges. “With minimal training—usually less than an hour—you can walk more fluidly and with a natural pattern because you recruit and strengthen the muscles that support and elongate the spine,” she said.

Other benefits, Paley added, are confidence and focus. “You are walking for exercise, not just strolling—the poles are consistent reminders to move better.”

Pole primer

“Talk to your physical therapist before you try them,” physical therapist Sue Kushner cautioned. Then choose poles based on your height, weight, hand size, issues (balance, for example) and your fitness or mobility goals.

“Make sure they’re the proper height—about waist level, a little higher than a cane—and a comfortable weight. If you’re using them all day, you do care about their weight, especially if you have any weakness in your wrist muscles,” Kushner added.

One drawback is that you can’t carry much with poles in both hands. However, a backpack is one possible solution.

Good poles cost about $90 to $140 and should last a lifetime.

Courtesy of Jayah Faye Paley,www.PolesForMobility.com

If walking is your favorite exercise, now is the time to plan ahead so winter doesn’t disrupt your regimen. Here are a few recommendations:

• In snowy or icy weather, avoid walking outdoors—even to take Fido out. A sudden tug on a slick sidewalk can send you flying. If you twist an ankle or tear a ligament, it can lay you up for a couple of months, plus you’ll have to do rehab. If you’re already weak, it might even put you into a wheelchair.

• Consider the great indoors! Mall-walking. Nearby gyms or YMCAs. Some offer monthly

memberships that you can use during winter weather. Public schools or colleges. Call to find out if they are open to walkers in the evening.

• Consider using a walking device for extra assistance when it’s cold.

• Always choose supportive footwear with a good tread.

• Take advantage of clear days to get out; look for parks where walking paths have been cleared.

• Depending on your balance and skill level, cross-country skiing or ice skating can be fun and challenging ways to take advantage of winter weather.

Walkers: What’s Your bad Weather Plan?


OK to Mix Pregnancy and MSResearch continues to confirm it’s OK to mix pregnancy and MS. A study published online in Annals of Neurology June 27, 2011, compared 432 births to women with MS and 2975 births to women without MS, confirming previous findings that, overall, the women with MS had normal pregnancies. The mean birth weight and gestational age of babies did not differ and women with MS were not at greater risk of adverse deliveries, including Caesarean sections.

It was the first study where researchers were able to control for other factors that could af-fect outcomes, such as disability levels, obstet-rical history and body mass index.

Preparing for PregnancyThe good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm.

Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. louis. “I also suggest women

think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.”

Meds, pregnancy and MSNone of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again.

“until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says Dr. Green. “But a new study quotes a beneficial effect on relapse. People with non-aggressive disease may be able to wait to resume DMDs, which can’t be taken while nursing.”

Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green.

“Symptoms during pregnancy are probably not MS—tiredness doesn’t mean your symptoms are coming back,” says Eileen Davis, APN, who has worked with people with MS for 12 years in New Jersey and New York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.”

connect the teamConnect your obstetrician and neurologist to coordinate your care. Visit www.nationalMSsociety.org/pregnancy for “Pregnancy, Delivery and the Post-Partum Period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. All forms of anesthesia are considered safe for women with MS.

Don’t wait to plan for what happens after delivery. Tap family and friends about helping with housework, food and, of course, watching the baby!

Living with mS

Julie Hammond, diagnosed with MS in 2002, with son Travis. Courtesy of Greater New England Chapter.

Resources on MS and pregnancy

Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies.

www.nationalMSsociety.org/pregnancy

“MS and Starting a Family”—Momentum, Winter 2010-2011 www.nationalMSsociety.org/Momentum (click “Back Issues”).

Kara’s Story – Part I www.youtube.com/watch?v=F1-heWhc7jIThe National MS Society follows Kara from her first trimester…

Kara’s Story – Part II www.youtube.com/watch?v=npgN99NeD1k&feature=channel…all the way through to the birth of her baby boy.

The MS Daily Minute www.nationalMSsociety.org/dailyminute

Sixty-second videos packed with information on • Beginning MS Therapy after Pregnancy• Relapses During Pregnancy• Breastfeeding with MS• Support During and After the Pregnancy



Volunteers

Classified AdsFREE: Power wheelchair, Invacare Storm TDX 3, needs to be picked up in Sudbury, MA. Contact Bruce: 978-443-9885 or [email protected]

FREE: Apex Stand Assist lift. Brand new. Rochester, NH Call: 603-330-9130

SALE: Rand-Scot Easy Pivot patient lifter, Model TVl-601. Portable, can be used at home or in hotels when traveling. Good condition. $750 or B/O. Needs to be picked up. 207 846-6857

SALE: 2004 Toyota Sienna Handicap Accessible Van: Original owner. 31,000 miles. Includes: drop floor, power ramp with side entry, kneel, six-way transfer seat, two steering wheel spinners, left foot gas pedal. Service records are available. $19, 699. For full price, will throw in electric wheelchair/scooter. Paul at [email protected]

To place an ad, email [email protected] or call 800-344-4867

For updated classified ads, visit MSnewengland.org

Giving Thanks At the Greater New England Chapter of the National MS Society we are grateful to be able to support people in Maine, Massachusetts, New Hampshire and Vermont living with multiple sclerosis. Much of the support we provide is due to the thousands of volunteers who help us every day.

We couldn’t be more thankful for the more than 5,400 individuals who volunteered in 2011. These selfless folks shared their time and talents to support our events, provide important programs, and bring essential services to those living with the disease -- either as patients, family members, or caregivers.

More than 3,400 volunteers came out in force to help at our 42 walks and eight bike rides. Over

75 self-help group leaders led meetings, shared information, and provided networking opportunities throughout the region. An untold number of volunteers participated in committees like the Government Relations Committees – who are helping push forward new insurance options for the uninsured in Maine and to fund the catastrophic illness program in New Hampshire. The GRC members also coordinated Networking Breakfasts in Burlington, Vermont and are working to keep the Home links program funded in Massachusetts.

There are the working professionals who volunteer to provide retirement planning seminars. Peer support volunteers offer information, companionship, and emotional support to people with MS. Office volunteers make phone calls, stuff envelopes, and build event packets. Our committed Board of Directors help chart the future of our Chapter and support our many goals and initiatives, and many, many more -- too numerous to

mention here.

The holdiay season s truly a time for the Greater New England Chapter to be grateful. We are thankful for the generosity of the people who volunteer and serve, who join us as we work to improve the lives of our neighbors, friends, and family and who give so freely of themselves to –

Stop MS now. Restore what's been lost. End the disease forever.

Thank you!


WANT TO GIVE AT THE OFFICE? Making a contribution through an employer’s charitable giving program is a convenient, easy way to help us move toward a world free of MS. These programs offer employees the opportunity to make an annual pledge to charity, choosing organizations from a list—and choosing an automatic per paycheck deduction, or a one-time personal check.

The federal government and companies nationwide will soon be kicking off their 2012 campaigns. It’s a good time to ask about how to give at your own workplace.

For public sector employees

The nation’s largest workplace giving campaign

is the Combined Federal Campaign (CFC). It is open to federal, military and postal employees. last year, more than a million people took part, giving more than $281.5 million to thousands of charitable organizations. The National MS Society is in this pool. If you participate, use the code CFC #11409 to designate your donation to the Society.

For private sector employees

last year, employees from such companies as unitedHealth Group, American Express, Ameriprise and Toyota helped the Society with their strong participation in workplace giving campaigns. If your company participates, the National MS Society should be listed in your company’s campaign materials under the heading Community Health Charities. If not, ask your human resources department why! (Visit www.healthcharities.org/Our-charities for more information).

Get creative

Your company doesn’t offer an employee giving program? More than a third of the nation’s employees work in corporations that do offer a giving program. Talk to your benefits administrator about getting in on this. Or call us to see if we can help.

cFc #11409

FundraisingRecent Event Re-capsMS challenge Walk - Sept. 9-11 The tenth annual MS Challenge Walk was a success and included 606 walkers, more than 200 crew and 50 one day volunteers! The walkers enjoyed great weather and together raised more than $1 million.

Bike & hike the Berkshire – Sept. 24 The 2011 Bike MS season ended with Bike & Hike the Berkshires. Riders and hikers joined together to enjoy the beauty of the Berkshires, and raised more than $100,000.

climb to the Top – Boston – Sept. 17 We returned to New England’s tallest building, the John Hancock Tower in Boston, for our second annual Climb to the Top. We raised more than $100,000 as climbers raced up 61 floors. Elite climbers finished in less than eight minutes. Thanks to Normandy Realty Partners and Boston Properties for their support.

Falmouth Road Race - August 14 The New Balance Falmouth Road race draws runners from all over the world to Cape Cod. The MS team of 25 runners raised more than $32,000. Thanks to the New Balance Falmouth Road Race for our continued participation.

Link up for MS - Sept. 20 The link up for MS Golf Tournament was packed with great golf, fun activities, and a chance to network. Bob Halloran from WCVB-TV5 hosted the evening festivities and award presentations, with raffles and a live auction.

Fall Walks - Sept. 24-25 The fall Walk MS season wrapped up with 10 walks in Maine, Massachusetts, New Hampshire and Vermont. Close to 600 walkers raised more than $63,000 while celebrating hope for the future.

Fashion Plates - November 18 The annual Fashion Plates luncheon and Fashion Show was attended by 400 participants -- the largest Fashion Plates to date. This unique combination of support for women with MS and fundraising raised more than $60,000.

Boston Volvo 5k Road Race - November 24 On Thanksgiving Day the fourth consecutive Boston Volvo 5K Road Race hosted 1,300 runners, who woke early to run, raise funds, and work up an appetite. The first runner finished in 15:01! Thank you Boston Volvo and the Village Auto Group for covering all the event expenses.



Fundraising

The Boston College Women’s Field Hockey team with their check to the National MS Society.

On September 2 the Boston College community women’s field hockey team hosted it’s fifth annual

fundraiser to benefit the National Multiple Sclerosis Society. The event honors Boston College alum and field hockey player Kathleen Murphy, who was diagnosed with MS in 2007. The has raised nearly $40,000 to help create a world free of MS.

RIDE WITh uS

IN 2012RIDE ThE VINEYARDSaturday, May 5 - Martha’s Vineyard High School Vineyard Haven, MA• 15, 30 & 60 mile scenic routes featuring quaint charm

and beautiful ocean views

RIDE BAR hARBOR RIDE Saturday, May 19 - Bar Harbor, ME• 15, 30 & 60 mile routes in Maine’s scenic vacation spot

cAPE cOD GETAWAYSaturday-Sunday, June 23-24 uMASS Boston to Provincetown, MA• 75 & 100 mile route options on Saturday,

75 miles on Sunday• largest MS Ride in New England with more than

2,000 ridersMINuTEMAN RIDEJuly 14 - Concord District Court, Concord, MA• 25 & 60 mile route options through Metro-West

towns

GREAT MAINE GETAWAY Saturday-Sunday, August 4-5 Saint Joseph’s College, Standish, ME• Saturday Routes include 25, 50, 75 & 100 mile options• Sunday choose between 50 & 75 miles routes

GREEN MOuNTAIN GETAWAYSaturday-Sunday, August 11-12university of Vermont, Burlington, VT• Saturday Routes include 20, 40, 75 & 100 mile options• Sunday choose between 40, 75 & 100 mile routes

Nh SEAcOAST EScAPEAugust 18 - Stratham Hill Park, Stratham, NH• Route options include 25 & 60 mile options

BIkE & hIkE ThE BERkShIRESSeptember - The Berkshires, MA• Ride 25, 50 or the 100 mile Mt. Greylock challenge

route• Or choose between 2 hiking trips to the

summit of Mt. Greylock

To Register: bikeMSgne.org or 800-344-4867

bike to create a world free of MS

Journey of Hope

JOIN uS ON A JOuRNEY OF hOPE

Funds raised from Journey of Hope are distributed directly to participating MS Clinical Centers that are formally affiliated with the Chapter.

May 12Massachusetts Journey of Hope, Natick

To Register: walkMSgne.org, 800-344-4867 [email protected]

DENNISON FAMILY hONORS MEMORY OF SISTER WITh MuLTIPLE ScLEROSIS

Karen and Tim Dennison keep the memory of Karen’s sister, Brenda Cobb Williams, bright by continuing her fight against multiple sclerosis, the disease that Brenda lived with

for 20 years before she died of complications. Now in its fourth year, the Dennison lubricants MS Golf

Classic raised an impressive $21,800 from its MS Golf Classic. Headquartered in lakeville, Dennison lubricants hosted more than 100 golfers at the Poquoy Brook Golf Club, also in lakeville.

(L-R): Arlyn White, President & CEO of the National MS Society, Greater New England Chapter; Brian Dennison, V.P. Sales & Marketing, Tim Dennison Sr., Pres. & Founder, Tim Dennison Jr., Territory Sales Manager, and Karen Dennison, V.P. Corporate Relations & Co-Founder.


Fundraising

The following excerpt is by Joey Carberry, 13, who hiked “Bike & Hike the Berkshires” the past two years with his mother, Chapter Trustee Christine Carberry.

In 2010, I went around my school, asking for donations for NMSS. I raised around $100 dollars, I decided, this was not all I could do. At our house, we have a granite garden, originally 12ft by 12ft. This year, I asked my parents to expand it, they did. While my mother worked in the garden, I worked at the stand. When we got [to the Berkshires] we had raised over $6,500 dollars with $500 coming from our garden sales. Next year my goal is going to be higher, and higher. Whether you think you can raise money or not, just remember the kid who sat at a stand selling veggies, herbs, and flowers. Read the complete story in MSConnection on MSnewengland.org.

Christine and Joey Carberry at 2011 Bike & Hike the

Berkshires

Cape Cod resident Dave Nowlan, who broke his back in a sledding accident just two years ago, is planning to ride from Encinitas, Calif., to Cape Cod, Mass., in an effort to raise money to help fund research for a multiple sclerosis cure.“I’m the luckiest guy in the world to have recovered from a broken back without being paralyzed and be able to train for a long cross-country adventure,” says Nowlan, 57, of Falmouth, Mass.In 1990, Claire Nowlan, Dave’s wife, was diagnosed with multiple sclerosis. Julia Ide, Dave’s oldest child, was also diagnosed with MS in 1997. Claire and Julia are both extremely positive people and have not let MS deter them from their goals. Julia ran the Boston Marathon in 2009, and Claire expresses her love of music

and children by continuing her work as a voice teacher. Plus, she walks three miles a day despite the effects MS has on her body.Dave is cycling across the country to call awareness to

MS and raise money to help find a cure and additional therapies for people living with the effects of this disease. Claire will be driving the support vehicle and helping Dave on this 3,350-mile adventure. He’ll be blogging and posting pictures and videos on the web throughout his journey to keep friends and supporters updated with his daily progress. Dave is seeking financial assistance for his ride across the country. To help, contact [email protected] or [email protected] for additional information.

Plane Pull®Presented by:

June 9 Portland Jetport, Portland, maine

For more information:MSnewengland.org

207-781-7960

March 23 Portland, Maine

For more information: MSnewengland.org • 207-781-7960

From broken back to Cycling Across America for MS Cure

Climb to the TopBoston

3RD MARCHSATURDAY

JOHN HANCOCK TOWER

Joh

n H

an

co

ck

To

we

rNEW ENGLAND’S TALLEST BuILDING

Register at climbMSgne.org / 800-344-4867Presented by:



Fundraising

Accept the chAllenge!A World Free oF Multiple sclerosis

NATIONAl MulTIPlE SClEROSIS SOCIETY GREATER NEW ENGlAND CHAPTER

register todAy!Mschallengewalkcapecod.org

800.344.4867

3 dAys. 50 Miles.

septeMber 7-8-9, 2012(two-day option, sat. & sun.)

Once in a while, a challenge calls that you simply must answer. Challenge Walk MS is the perfect way to embrace a personal challenge of spirit and strength, while making an important difference in the lives of people living with MS.

We unite together during the three-day, 50 mile Challenge Walk MS on Cape Cod to keep us moving toward a cure.

REGISTER TODAY & BEGIN FuNDRAISING

As soon as you register, you’ll have access to our online fundraising tools, making fundraising easier and more convenient than ever! A minimum fundraising goal of $1,500 is required, but we’ll be with you every step of the way.

TEAM uP FOR MORE FuN

Forming a Challenge Walk MS team is an opportunity to share a great experience with friends, family members or co-workers — all while moving us closer to a world free of MS.

START LOcATIONHYANNIS VIllAGE GREENFriday (3-day start): Walkers start in Hyannis and make their way to Brewster via Yarmouth—seeing ocean, commerce, and kettle ponds.

Saturday (2-day start): Walkers travel through Eastham and Orleans, then back to Brewster, enjoying lunch at historic Coast Guard Beach.

Sunday: Walkers head to Dennis for the“pre-finish,” with massage and barbecue, and a chance to say good-bye to friends met along the way. Everyone completes the Chal-lenge with a parade down Main Street, Hyannis.

NationalMultiple SclerosisSocietyGreaterNew EnglandChapter

— 2012 —Jan 12 - Webinar: A 21st Century Approach to Job SearchingJan 24 - Where is My Memory? Cognitive Changes in MSJan 26 - Teleconference: Get Informed: legal Protections in the WorkplaceFeb 9 - Teleconference: Managing Challenging ResumesFeb 23 - Teleconference: Reinvent YourselfMarch 3 - Climb to the Top: BostonMarch 8 - Teleconference: Home-Based Employment: What Employers WantMarch 12-18 - MS Awareness Week

March 15 - Emerging TherapiesMarch 22 - Teleconference: Don’t Do It Alone: Employment ResourcesMarch 31 - Walk MS: Easton, Newburyport, & Worcester, MAApril 1 - Walk MS: Boston, Dartmouth, & Plymouth, MAApril 14 - Walk MS: Portsmouth, NHApril 15 - Walk MS: Manchester, NHApril 16 - Marathon Strides Against MS (Boston Marathon)April 28 - Walk MS: Androscoggin Co., Augusta, Brunswick, Camden, Caribou, Ellsworth, Greater Portland, Waterville, & York Co., ME; Burlington, VT; Marblehead & Berkshires, MAApril 29 - Walk MS: Concord, Gardner, & Hyannis, MA

May 3 - using Assistive Technology for People living with MS May 5 - Bike MS: Ride the VineyardMay 5 - Walk MS: Nashua, NH; Northampton & Cohasset, MAMay 6 - Walk MS: Springfield, MA; North Conway, NHMay 12 - Journey of Hope, MAMay 12 - Walk MS: laconia, NH; Montpelier, Rutland, & upper Valley, VTMay 19 - Bike MS: Ride Bar HarborMay 30 - World MS Day June 9 - MS Plane Pull®, MaineJune 23-24 - Bike MS: Cape Cod GetawayJuly 14 - Bike MS: Minuteman Ride

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Greater NeW eNGLaND CHaPter MOVING TOWARD A WORLD FREE OF MS WINTER …s3images.coroflot.com/user_files/individual_files/274257... · 2011. 12. 20. · MOVING TOWARD A WORLD FREE