A Shared Promise: Annual Meeting of Members & Research Update Conference Saturday, October 26, 2013More information on page 3

Inside MS Connection:

MOVING TOWARD A WORLD FREE OF MS FALL 2013

Greater NeW eNGLaND CHaPter

Walk MS in the Fall!Dates and locations on page 17

November is NATIONAL CAREGIVERS MONTh

Vaccinations page 7

Program highlights page 9

$1 Million Reason to Ride page 19

Care Partners page 5-6

2 JOIN THE MOVEMENT: MSnewengland.org

I am reaching out to garner the support of those who know all too well the challenge of living with multiple sclerosis. We know that MS breaks connections between the brain and the body. Medical researchers are working to find the mechanism to repair those connections. We also know that MS is often the conduit to making new connections. The more connections we make, the stronger our movement becomes; and one day we will achieve a world free of MS. Every connection counts!

If you’re a person who has MS, you have a special opportunity to form connections that can achieve lasting results for others with MS, for their family members, and for the community overall. There’s always something you can do, and very often you benefit from the help you give to others.

Perhaps you use a scooter or wheelchair to get around because of MS. Even using a cane gives you a particular appreciation for how difficult it can be to get in and out of buildings and stores and restaurants. If you’ve ever thought, “Someone ought to do something about it!” that someone is you. That’s an easy connection to make when you know how, and our chapter is offering training on assessing the accessibility of public spaces. It’s a simple process, and it can produce results.

We also offer training for folks who want to talk to their elected officials to change public policy. In Maine, Mass., N.H., and Vermont, members of the MS community each out to state and federal legislators to advocate for removing obstacles to quality health care and accessibility. When people who have MS talk to elected officials, change happens. Politicians need your vote, so they are open to connecting with you.

Awareness of MS is very important. Lots of people have heard of MS, or know someone with MS, but not many actually understand MS. You can form new connections through training provided by our chapter on creating awareness in your community. It’s not complicated, and the choices are based on what works for you.

You might be a people person, who enjoys sharing information and connecting socially. You can volunteer to do that too! We’re also offering training on organizing social gatherings for people with MS and simple educational programs. You don’t need to be an MD or an expert on anything, just someone who likes to bring people together.

Training is available in Vermont, Maine, New Hampshire, and Mass. on different dates, and in locations that should be drivable for most people. If you live in a border area, you’re welcome to attend whichever date and location work best for you. Check page 8 of this newsletter for details.

You only need to be over the age of 18, and have a desire to help, to volunteer and to be trained. As a result of the training, you will plan at least two activities in your community with the support of Chapter staff. Email or call to complete a pre-screening for the volunteer training session near you. Thank you for reaching out to make new connections!

Arlyn White President & CEO

Publication of the National Multiple Sclerosis Society Greater New England Chapter

101A First Avenue Waltham, MA 02451-1115 1-800-344-4867 www.MSnewengland.org facebook.com/MSnewengland tweet @ MS_newengland youtube.com/MSnewengland

Chairman • Douglas E. Bryant President & CEO • Arlyn A. White MSConnection 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 Society 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 Society recommends that all questions and information be discussed with a personal physician. The Society is dedicated to mobilizing people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

Multiple sclerosis interrupts the flow of information between brain and body and can stop people from moving forward in their lives. With the help of people like you, the National MS Society addresses the challenges of each person whose life is affected by MS and helps them stay connected to the great big moving world.

© 2013 National Multiple Sclerosis Society, Greater New England Chapter

From the President

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Programs Programs

A Shared Promise: Annual Meeting of Members & Research Update Conference

Saturday, October 26, 20139:00 a.m. - 1:30 p.m.

Join us for the annual meeting of members, research updates, volunteer recognition,

and wellness & resource EXPO. • Maine: Portland, Doubletree by Hilton

• Massachusetts: Marlborough, Best Western Royal Plaza Hotel

• New Hampshire: Meredith, Church Landing

• Vermont: Burlington, Hilton

To attend: www.MSnewengland.org

or 800-344-4867The Annual Meeting of Members is held to elect the Chapter Board of Trustees, and to consider the Annual Report of the Board, and the Treasurer’s Report of the Chapter accounts. The Nomination Committee, prior to submission for election, will review Trustee nominations. Send Trustee nomination to the address below by October 1, 2013. Please provide the name, address, phone number, and brief background of the nominee, as well as your name, address and phone number. If you cannot attend, but would like to vote by proxy, fill out and mail the form below. (Nomination and proxy forms are both on MSnewengland.org, at the Annual Meeting web page.)

Name ______________________________________________________ Phone ______________________________________________________

Address _____________________________________________________ _____________________________________________________

____ I will not attend, I assign my proxy vote to Chapter Chair Douglas Bryant

____ I will not attend, and I assign my proxy vote to: ___________________

Mail this form to : Arlyn White National MS Society, Greater New England Chapter

101A First Ave. Waltham, MA 02451

[ PROXY FORM ]

[ To attend, go to MSnewengland.org or call 800-344-4867.]

MONEy MATTERSMAkING hEALTh INSURANCE ChOICESStarting October 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace—a component of the Affordable Care Act—commences enrollment for coverage to begin January 1, 2014.

The web-based Health Insurance Marketplaces (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans and get tax credits and other cost help. The program also includes government-certified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education, and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as multiple sclerosis, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care, and prescriptions.

All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1 at www.healthcare.gov. Call the Society at 1-800-344-4867 or visit www.nationalMSsociety.org/ACAkickin for more information. n

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Programs Without Borders

help is a Call Away * 800-344-4867No matter where you live, if you have questions about multiple sclerosis, an MS Navigator can help you. Submit a request to generalmailbox@nmss.org. Please include your name, mailing address, and phone number. Or call us toll-free, Monday-Friday, 9 a.m. to 5 p.m. Find resources for all of the following, and much more!

n REFERRALS to Neurologists, MS Clinical Centers, Legal Services, Mental Health Providers, Allied Health Professionals, Housing Needs, Self-Help and Support Groups

n RESOURCES for Medical Equipment, Home Modifications, Transportation, Independent Living, Financial Assistance

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

n COUNSELING for Employment, Insurance, and Public Benefits

keep S’myelinKeep 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: keepsmyelin@nmss.org.

MSConnection.orgWhat if everyone who cares about MS could join together in one place?

Share what you know at www.MSConnection.org. When you join the National MS Society’s newest online community you’ll be able to make meaningful connections when, where and how you want, with easy access to the best content and resources the MS community can bring you. You can share information about the topics that are most important to you, connect with people, and have expert MS information and opinions right at your fingertips. Join today!

No computer? ≈ MSFriends is a telephone support program. Call toll

free: 866-673-7436

≈ The Online Peer Connections Program has a telephone component for individuals with limited computer access: 303-698-6100 ext. 15169.

MS Learn OnlineWebcasts and podcasts are pre-recorded and may be played at any time

MS Learn Online is an educational webcast series featuring three channels of programming —

n Feature Presentation: Experts present on topics such as Research, Treatments, Relationships, Employment, Insurance, Staying Well, and Living with MS.

n Daily Minute: A short informational clip about MS.

n Q&A: Every week, MS Learn Online experts answer a new viewer question.

Transcripts (.pdf format) and podcasts (.mp3 audio format) are available for most programs. Visit: nationalMSsociety.org > Multimedia Library > Webcasts & Podcasts

A series of online classes that will help you boost your decision-making power.

It’s your MS and it’s your medical care, but sometimes it can feel like

other people are making your decisions for you. These classes keep you in the driver’s seat.

n Be an active member of your healthcare team n Understand your doctor’s medication recommendations n Improve your health and well-being n Articulate the reasoning behind your decisions n Improve communication with your healthcare providers n Use sound reasoning to make decisions about your health

n Decide whether participation in clinical trials is right for you

This course is offered as an online program so you can access the class when and where it is most convenient for you. 1-800-344-4867 or at www.nationalmssociety.org.

home LINkSOffers case management services to help stabilize client and family during times of difficulty or crisis. To learn more, call 1-800-344-4867 or email gnehomelinks@nmss.org.

Ask the ExpertsHave a question about MS? Get expert advice and opinions on common MS questions online at MSnewengland.org > Programs and Services > Ask the Expert

No matter where you live, you can access programs and services by telephone and the internet.

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Care Partners Moving Toward a World Free of MS

BY Ralph Montefusco

When my wife, Michele, was diagnosed with MS in October 2006 we found ourselves with a steep learning curve. After the shock of the diagnosis, we started to learn about the various forms of MS, and that it constantly changes. We established a structure around her treatment, and accommodation of symptoms. So far, Michele has relapsing-remitting MS, and continues to work full time.

Michele and I have been married for 30 years. Ours has always been an equal partnership. I tried to provide support and, when needed, care. I used my experience as an activist to work with the Greater New England Chapter Government Relations Committee, advocating on behalf of people with MS here in Vermont.

For the past 10 years, I worked as a consultant/organizer. Michele’s job gave us excellent medical insurance. Benefits were never an issue, and the income was nice! I am a few years older, and our plan was for me to retire first, while she continued working for several more years. The first change to our plans was to adjust that assumption.

As we settled into MS in our lives, it became apparent that, just like the disease, care giving takes many forms. Initially I was the supportive husband, unraveling details of the disease, medication, and living with MS. Over time I took on more tasks, allowing Michele to focus on her job. Eventually, we decided I would retire at the first opportunity and take over household responsibilities. This was another adjustment.

While this was a hit to our income, it freed both of us! I am no longer on the road, working late, and spending large chunks of time on the phone and computer. Although I have a lot to do at home, it isn’t squeezed around clients. Meanwhile, Michele doesn’t have to struggle with daily tasks. We both prefer that MS wasn’t with us but, for now, quality of life has improved.

When not working, Michele returned to bird watching, an earlier passion. Meanwhile, I satisfy my advocacy inclinations as Co-Chair of the Burlington Accessibility Committee in Vermont, and chairing the MS Government Relations Committee in Vermont. The future certainly holds more changes, and further adjustments will be necessary. Our partnership will remain the most significant means for both of us to adjust to whatever happens. n

BY dick peteRson

Dick took early retirement from his job in 2005 to be his wife’s full-time carepartner. Elizabeth, who was diagnosed with MS in 1995, leads a self-help group for the Society in the couple’s hometown of Summerville, S.C.

Elizabeth’s disability is right-side paralysis. I do for her everything she can’t do for herself.

This includes bathing, dressing, injecting her MS medications, meal preparation, housecleaning, and whatever has to be done.

Elizabeth’s onset of MS was gradual. This gave me a chance to adapt, to work out our system of doing things. I help her, but she helps me help her.

Another transition is more subtle. Elizabeth doesn’t give up easily. Her determination now becomes my doing. I take her where she “needs” to go, bring her what she needs within reach. These are not the necessities of living with MS, but the pursuits of an active woman whose MS is an obstacle. I tell myself that the alternative—if I were not there making it happen for her—would be worse.

My needs are still needs. Left unmet, they could affect the level of care I give Elizabeth. Being away from Elizabeth requires working out the logistics of her care. We’re fortunate our daughter and her family live nearby. We have close friends from church. And we have kind neighbors. These are all resources we can call on. I have to resist the idea that I’m the only one who can give her what she needs.

Just because MS is there doesn’t mean everything has to go. I ride a motorcycle, serve on my church’s care committee, and work on the vacation mountain home Elizabeth and I began as a dream before MS entered our lives.

When MS arrived, I decided that her disease was my disease and I could no more avoid living with MS than she could. I hate MS. MS is my enemy; Elizabeth is not my enemy. If I allow emotion to distort my love for my wife, I could easily shift that hate toward her.

Michele and Ralph

CARE PARTNER LIFESTyLE ChANGES: Opportunities and Challenges

Elizabeth and Dick

cont. on next page

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Programs

Meet our Two Summer Fellows The Chapter was pleased to award two medical student fellowships in 2013. Each fellow rotated through six of the Boston-area MS Centers for Comprehensive Care to learn about the diagnosis, management, and treatment of MS.

Jessica is a Massachusetts native and completed her undergraduate degree in biology at Tufts University. She spent two years

teaching English in Madrid, Spain and has recently completed her first year of medical school at Tufts University. Jessica has participated in scientific research and has had her findings published.

Matthew is a New Hampshire native, who completed his undergraduate degree in psychology and neuroscience at the University

of New Hampshire in Durham. Matthew has completed his second year of Osteopathic Medicine at the University of New England, College of Osteopathic Medicine, in Biddeford, ME. He has a strong interest in neurology and a personal connection to MS.

Both fellows reported having a tremendous learning experience from each of the centers they observed.

Jessica Gonzalez

Matthew Libman

Because MS affects more than just the individual diagnosed, the National MS Society programs welcome friends and family members unaccompanied by a person with MS.

CARE PARTNER SUPPORT RESOURCESNational MS Society Publications

¾ A Guide for Caregivers: Practical issues faced by carepartners. Includes resource list

¾ Someone You Know Has MS: A Book for Families: For children, 5-12. A story about Michael and his family explains MS and explores children’s fears and concerns

¾ When a Parent Has MS: A Teenager’s Guide: For older children and teenagers who have a parent with MS. Discusses real issues brought up by real teenagers

¾ PLAINTALK: A Booklet About MS for Families: Discusses some of the more difficult physical and emotional problems many families face

¾ Care for the Care Partner: Preventing carepartner burnout

¾ Hiring Help at Home: Checklists and worksheets for people who need help at home. Forms for a needs assessment, job description, and employment contract

Organizations that can help

¾ Caregiver.com: Coordinates a national network of support groups, financial assistance and resources for caregivers. www.caregiver.com

¾ Caregiver Action Network: The Caregiver Action Network educates, supports, empowers and speaks up for loved ones dealing with a chronic illness, disability, or the frailties of old age. www.CaregiverAction.org

¾ CaringBridge®: CaringBridge provides online support to post updates on health conditions and support needs, and assists people with staying connected via posts on their personalized website. www.caringbridge.org/nationalmssociety

¾ Family Caregiver Alliance®:The Family Caregiver Alliance offers a service called the Family Care Navigator, which is meant to help caregivers navigate government, nonprofit, and private assistance programs. www.caregiver.org

Call the National MS Society (1-800-344-4867) if you need help identifying care partner resources in your community.

I’m continually trying to strike a reasonable balance between maintaining my autonomy as a man and doing what needs to be done for my wife’s care. This means not just caring for her physically, but emotionally, intellectually and spiritually. I accept that I cannot do it all perfectly or completely.

And we laugh. When Elizabeth is bossing me around, I have to know it’s the stuff she would be doing if she could. If she’s taking too long ending a conversation, I push the “on” button of her wheelchair and direct the joy stick to come along. When she feels vulnerable in her wheelchair, I’ll sing “Stand by Me.” Or I’ll sing the opening line to “Bridge over Troubled Water” when she’s depressed or frustrated. My singing is always good for a laugh. n

CARE pARtnERs cont. from page 5

November is National Caregivers Month

7 JOIN THE MOVEMENT: MSnewengland.org

Programs Programs

Fall is the time when many people think about vaccinations for school and for general health. People with MS often have concerns about the safety of routine vaccinations. The Multiple Sclerosis Council for Clinical Practice Guidelines in 2001 recommended that people with MS should follow the vaccination guidelines of the Centers for Disease Control (www.cdc.gov), and not be denied access to health-preserving and potentially-life saving vaccines because of their MS.

Decisions about the potential benefits and risks of any given immunization need to be made in consultation with your healthcare providers, including your family physician and neurologist.

Flu Vaccines Flu vaccines are designed to protect against three influenza viruses that experts predict will be the most common during the upcoming season. Three kinds of influenza viruses commonly circulate among people today: influenza A H1N1 viruses, influenza A H3N2 viruses, and influenza B viruses. Each year, one flu virus of each kind is used to produce seasonal influenza vaccine.

The injectable flu vaccine, which is an ‘inactivated’ vaccine, is recommended for everyone over 6 months of age. It has been studied extensively in people with MS and is considered quite safe. However it is not yet known whether it is as effective for those talking natalizumab or fingolimod.

People who are experiencing a serious relapse that affects their ability to carry out activities of daily living should defer vaccination until 4-6 weeks after the onset of the relapse.

FluMist® is a live-virus flu vaccine (sometimes called LAIV for "live attenuated influenza vaccine”) that is delivered via a nasal spray. This live-virus vaccine is not recommended for people with MS.

A high-dose flu vaccine is available for people over age 65. This high-dose vaccine has not been studied in people with MS of any age.

The flu virus (like any other virus) can precipitate MS exacerbations, and people with limited mobility are more likely to develop complications of the flu, including pneumonia. Dr. Aaron Miller, the National MS Society’s

Chief Medical officer recommends the seasonal flu shot as a safe and effective vaccination for people with MS. Additional information about flu

can be found at: http://www.cdc.gov/flu or http://www.cdc.gov/flu/about/

qa/1011season.htm

Varicella VaccineThe varicella (chicken pox) vaccine may be specifically considered for people with MS who have never had chicken pox, lack evidence of prior immunity, and are considering starting an MS medication that has the potential to suppress cell mediated immunity. The vaccine should be taken well before starting MS medication.

Smallpox Vaccine The smallpox vaccine has never been studied in people with MS; however, it is used to prevent a serious, generally fatal illness. Because of the serious adverse events that can occur with this vaccine, however, Dr. Miller recommends that no person with MS be given it unless he or she has been directly exposed to smallpox.

Shingles Vaccine The information about the shingles vaccine (Zostavax) isn't as clear-cut as it is for some other vaccines. In general, MS specialist neurologists do not recommend any live-virus vaccine for people with MS because live-virus vaccines can precipitate an increase in disease activity. However, Zostavax is somewhat unique because most people have had chicken pox earlier in their lives and therefore already have the virus in their bodies. If a person has had chicken pox or tests positive for the antibodies, this would likely be a safe and beneficial vaccine to take. However, each person needs to discuss the potential benefits and risks of this vaccine with her or his healthcare provider.

Special ConsiderationsPeople who are experiencing a serious relapse that affects their ability to carry out activities of daily living should defer vaccination until 4-6 weeks after the onset of the relapse.

Inactivated vaccines are generally considered safe for individuals who are taking an interferon medication, glatiramer acetate, mitoxantrone, natalizumab, or fingolimod.

VACCINATIONS

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Living with MS

ThE MS CLINIC AT ThE NEW ENGLAND REhAbILITATION hOSPITAL OF PORTLAND (MAINE)The New England Rehabilitation Hospital of Portland (NERHP) is pleased to offer its multiple sclerosis clinics to residents of Maine and surrounding areas. The goal of the MS clinic is to provide clients with a comprehensive assessment of their clinical and functional status and provide medical, equipment and therapy interventions that will help them live in their home setting at the highest level possible.

Led by a physiatrist (a physician trained in Rehabilitation Medicine), the clinic team includes physical, occupational and speech therapists, a nurse case manager and a representative from the National MS Society, Greater New England Chapter. During a clinic visit, each team member assesses the client’s functioning and needs in the areas of self-care, mobility, balance, vision, planning skills, cognition, swallowing difficulties and equipment needs (including orthotics). The chapter representative is available to discuss community resources and programs that the society offers. At the conclusion of the visit, the client is provided with recommendations to improve safety and function that range from short courses of outpatient rehabilitation, to assistive device needs, to follow up with his/her MS neurologist. If required, the MS clinic can also help to facilitate recommendations and referrals to external community agencies. Notes from the visit are then forwarded to the client’s referring physician, and/or MS neurologist.

For more information about The MS Clinic at New England Rehabilitation Hospital of Portland, call 207-662-8584, and ask about the MS Clinic. Or visit their website at www.NERHP.com. n

GET CONNECTED! VOLUNTEER TRAINING CONFERENCE

¾ Improve accessibility in your community

¾ Increase public awareness

¾ Plan a community event

¾ Advocate for yourself and others

Reach out and make a difference in your community! In addition to workshops, you will create an Action Plan to implement activities in your community with the support of the National MS Society. All conferences are 10:00 a.m. – 2:30 p.m. and include lunch.

To complete a pre-screening, please call 1-800-344-4867, option 2 and ask to speak with the program contact.

Topsham, MERed Cross Chapter

Saturday, Sept. 7

Pre-screening deadline: Sept. 3 Contact: Heidi Eastman

Waltham, MANational MS Society Chapter Office

Saturday, Sept. 28

Pre-screening deadline: Sept. 23 Contact: Martha Maynard

Concord, NhCrotched Mountain ATECH Services

Saturday, Sept. 21

Pre-screening deadline: Sept. 16 Contact: Allyssa Thompson

berlin, VTCentral VT Medical Center

Saturday, August 24

Pre-screening deadline: Aug. 16 Contact: Shanna McCabe

MS Computer Outreach ProgramStay connected! This program provides simple computers to individuals who are living with MS and are restricted to their own homes or are living in long term care facilities without access to computer. Technical support is provided on a limited basis. Computer training is not available. Recipients must have access to a high speed internet and have basic computer skills. For more information: call Allyssa at 603-623-3502 or email Allyssa.Thompson@nmss.org.

How you can help: Donate a used computer or equipment. Please contact the Chapter for the minimum requirements. Printers, scanners, and fax machines cannot be accepted. Volunteer: Refurbish donations, loading software and assistive/adaptive technology, and delivery with setup of computers to people living with MS.

9 JOIN THE MOVEMENT: MSnewengland.org

Programs Moving Toward a World Free of MS

PROGRAM hIGhLIGhTSDay of Service with our Partners:

¾ Bike the US for MS organizes cross country bike trips that raise awareness for MS research. When they aren’t riding their bikes, cyclists stop in towns along their routes and volunteer for people MS. These projects include yard makeovers, cleaning, painting, or anything else that may be difficult for people living with MS. Bike the US for MS approached the Chapter to enlist our assistance in finding people with MS along their Northern Route whom they could provide some service to when they rode through their town. In Brunswick, Maine, cyclists completed several projects including putting up shelving and painting. In Bethel, Vermont, cyclists helped a client with MS remove weeds from flower beds.

¾ Seven enthusiastic volunteers from Biogen Idec, Inc. spent a few hours on a hot and humid summer afternoon clearing away an overgrown yard for a gentleman in Hyde Park. The Society member who was on the receiving end of this service had been staying with friends for a few months while undergoing treatment and unable to keep up with the yard. Trimming, weeding, raking, pruning, and mowing restored this lovely neighborhood yard.

Game On: Round II and Ice Cream SocialThis encore event was held at the Neighborhood House Charter School in Dorchester, MA on Friday, June 21, and was even more popular than the first Game Night held earlier this year. The whole event was organized and staffed by the eight volunteers of the Multicultural Outreach Council. Cards, backgammon, checkers, Scategories, Yahtzee, and Scrabble were on the menu

along with Make-Your-Own-Sundaes. Over 30 people took their chances with old and new friends.

Maine PicnicSelf Help Groups are active and “hosting” in the State of Maine! On June 18, the Brewer, Maine Group hosted a picnic with Maine Adaptive Sports & Recreation in Holden. Picnickers were invited to try a variety of adapted cycles including hand powered, recumbent and volunteer assisted. One enthusiastic group member donated plants and flowers to the event for others to take home and enjoy in their patch of garden. A second outing took place in Maine on Sunday, June 23. The Ellsworth Self Help

Group, led by Grace Clement, hosted the Third Annual Family Fun Picnic at Fort Knox, a historical state park in Prospect, Maine. The sun was out, picnic baskets were overflowing, and a good time was had by all. Be on the lookout for the next picnic in Maine on September 28 in Medway. “We Mainers like to picnic!”

beyond Diagnosis: Moving Forward On June 29 in Manchester, New Hampshire, 22 people

with MS, family, and friends attended this program intended for those who are newly diagnosed within the last 5 years. Brant Oliver, PhD, NP, MSN, MPH of the Multiple Sclerosis Specialty Care Program at Concord Hospital presented information on MS, answered questions and facilitated the discussion. A volunteer living with MS for several years was also available to share her experience and answer questions from the

audience. Attendees enjoyed time networking over lunch and felt more confident to manage the impact of MS on their lives.

New Online Physical Wellness Provider TrainingWe currently have 63 active fitness providers in our network. Since rolling out the online training in March, we have had 36 people register for the online training, and five new providers join our network. n

Volunteers from Biogen Idec help out with yard work in Hyde park.

Family Fun picnic hosted by the Ellsworth self Help Group

research

JOIN THE MOVEMENT: MSnewengland.org10

PROGRESS AT AAN MEETINGOver 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating neurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN) meeting.

Here are a few highlights from the more than 500 MS-related presentations that focused on stopping MS, restoring function, and ending MS forever.

STOPPING MSProgressive MS

A small study of an oral blood-pressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primary-progressive MS. Further testing in a larger study is now underway. Researchers in a large trial of Gilenya for primary-progressive MS reported good progress in setting up the trial. This is one of several ongoing large studies in progressive MS.

MS Therapies

Results of a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four weeks was effective in reducing relapse rates and the risk of progression of disability. The study is continuing into a second year and the trial sponsor Biogen Idec has announced plans to apply for FDA approval later this year. Another one-year phase III trial found that injections of twice the standard dose of glatiramer acetate (Copaxone) taken three times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues.

A large study in France (ENIGM) found that among 200 people who switched from natalizumab (Tysabri) to fingolimod (Gilenya), 32% experienced a relapse during the “washout” interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months.

Results of two phase III trials of oral dimethyl fumarate (Tecfidera), approved by the FDA in March, suggest that

the treatment begins to take full effect after three months of use. This effect was sustained over the two-year span of the trials.

Several presentations focused on results from extension phases of completed clinical trials in relapsing-remitting MS. To read more, visit www.nationalMSsociety.org/ 2013AAN.

Exploring Disease Activity

An Argentinian study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse; therefore, people with MS planning a trip to a region with an increased risk of yellow fever should discuss the risks and benefits of vaccination with their doctor.

A small study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression.

A few studies focused on ways to track disease progression, including one that analyzed serum samples from people with MS who were taking glatiramer acetate (Copaxone). The researchers were able to find antibody profiles that could detect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of the National MS Society described efforts of the newly formed MS Outcome Assessments Consortium to accelerate development of more effective treatments for MS. They will analyze data from completed MS clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that can more sensitively track the impact of therapies on disease disability and progression in future trials.

professor Ebers, center, receives the John Dystel prize from Drs. timothy Coetzee and Bruce Cohen

research

11 JOIN THE MOVEMENT: MSnewengland.org

WhAT TRIGGERS MS?The Network of Pediatric MS Centers is currently recruiting 640 children with relapsing-remitting MS or clinically isolated syndrome (a single episode of MS-like symptoms) and 1,280 children without MS for a multiyear study to determine risk factors for developing MS. “We expect the study will provide precious pieces of information on risk factors for MS in general, and maybe help develop new treatments or preventative strategies,” says lead investigator Emmanuelle Waubant, PhD. For more information about participating and the 13 participating locations, contact janace.hart@ucsf.edu or call (415) 514-2476.

STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER

STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER

RESTORING FUNCTIONSeveral studies focused on the benefits of exercise for brain function and MS symptoms

such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog posts by MS researchers on these and other studies, visit blog.nationalMSsociety.org.

A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.

ENDING ThE DISEASE FOREVERSeveral reports focused on risk factors for MS, including one indicating that dietary salt

may stimulate activity of key immune cells involved in MS attacks. Read more at www.nationalMSsociety.org/dietarysalt.

For his extensive work on understanding MS, including the importance of genetic factors in who develops the disease and how genes interact with environmental factors, Professor George Ebers was this year’s recipient of the John Dystel Prize for MS Research, given jointly by the Society and the AAN.

Read scientific summaries on the AAN’s website at www.abstracts2view.com/aan. n

MAkING ADVANCES IN PEDIATRIC MSAn increasing number of medical centers across the United States are collaborating on research on how and why multiple sclerosis happens in young people. Their work is already yielding valuable information on early MS triggers.

A COLLAbORATIVE APPROAChThe Network of Pediatric MS Centers was initiated in 2006 through a grant from the National MS Society. Thanks to its multidisciplinary approach, researchers at participating institutions are gathering important data on the disease.

“We have been able to unravel key features, such as

distinct characteristics of the disease on the MRI and in the spinal fluid of patients younger than 11,” says Emmanuelle Waubant, PhD, professor of Neurology and Pediatrics at the University of California – San Francisco, which is currently running a large study aimed at unraveling the triggers of pediatric MS. See box below, “What triggers MS?

Thus far, the network has learned that MRIs of patients under 11 show larger and more poorly defined MS scars compared to adults, and that MS scars in young patients often go away within a few months, which is very rare in adults. They also observed that the spinal fluid of young patients can show more inflammation than in adults.

These findings have helped make the way forward clearer. “Now that these distinct features in younger patients have been identified, accurate diagnosis in children with MS is made easier, and early treatment can better prevent disability onset,” says Dr. Waubant.

To learn more about pediatric MS and research in the field, visit www.nationalMSsociety.org/pediatricMS. n

PROGRESS ON MS ThERAPIESBy MEGAn WEIGEL, Cnp, ARnp-C, MsCn

In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral dimethyl fumarate (brand name Tecfidera™) by the U.S. Food and Drug Administration (FDA) in March, 2013, we now have 10 disease-modifying therapies to treat

cont. on next page

research

12 JOIN THE MOVEMENT: MSnewengland.org

Check out Resources to find Clinical Trials on page 14

relapsing forms of MS—and more on the horizon.

Tecfidera is the third oral therapy approved to treat MS. A related compound, called Fumaderm (dimethyl fumarate and fumeric acid esters), has been used for decades in Europe to treat psoriasis. Tecfidera is a new and different formulation of dimethyl fumarate developed by Biogen Idec specifically to treat MS. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even protect against damage to the brain and spinal cord.

Two large phase III studies (the DEFINE and CONFIRM trials) found that Tecfidera significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. Before starting treatment, the FDA recommends a recent (within six months) blood cell count, repeated annually thereafter.

The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments such as Tecfidera.

Here are potential therapies to keep an eye on as we move forward into 2013 and beyond.

Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later.

Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta-1a (Rebif); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders.

Laquinimod is a once-daily oral immune modulator that showed in phase III studies to decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS.

Daclizumab and ocrelizumab are two other monoclonal

antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab given intravenously significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits.

Research is also underway on potential treatments for progressive forms of MS and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Current clinical trials include natalizumab (Tysabri), fingolimod (Gilenya), and ocrelizumab.

MAkING ChOICESWhen we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged.

Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations.

However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible.

To follow progress on potential MS therapies, sign up for MS eNEWS at nationalMSsociety.org/signup, or visit nationalMSsociety.org/research. n

Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years.

REsEARCH cont. from page 11

PAGE 1

hAPPy TWENTy-ThIRD ANNIVERSARy TO ThE AMERICANS WITh DISAbILITIES ACT!

July 26 marked the anniversary of this landmark legislation. Are you taking action to make your community more accessible to all citizens?

Despite the legislature’s vote to approve and expand coverage under the federal Affordable Care Act up to 138% FPL, Governor LePage vetoed the measure and the legislature

was short votes to over-ride it. The chapter will continue to partner with the Cover Maine Now! Coalition to pursue expansion. The legislature preserved funding and eligibility in the state budget for Maine’s Low Cost Drug Program for the Elderly and Disabled (DEL). There have been some modifications regarding asset tests to the Maine Medicare Savings Program.

Tune in to the new Biddeford Community Access TV show hosted by MS chapter board of trustee and government relations chair Bob Picone. The weekly show debuts in early August with a focus on health related matters. For more info go to biddefordmaine.org.

The FY’14 state budget includes level funding for the line item that contains language that funds the chapter’s Home LINKS program. We will soon know if

the Department of Public Health will continue to fund the program at last year’s level. Anyone who has encountered

physical barriers in medical offices or diagnostic equipment is encouraged to share their story with the chapter as we advocate for consistent standards in medical settings. Contact Virginia.Morse@nmss.org.

The Massachusetts Lifespan Respite Coalition (MLRC) is hosting the National Lifespan Respite Conference in Boston on October 15-17, 2013. If you are a caregiver for a loved one with MS and would like to learn about support systems and resources, please go to massrespite.org for the details regarding this event.

Despite a tremendous effort by coalition activists, the legislative proposal to allow NH to pursue Medicaid expansion up to 138% under the Affordable Care Act was

defeated and sent to an appointed study commission. The House voted favorably, but not the Senate. Governor Hassan supports the expansion. The study will be completed in October. HB462 to provide a consumer friendly review process for durable medical equipment under the Medicaid program was continued until January. The state Health Care Exchange launches January 1, 2014 per the Affordable Care Act. Check out your best options for coverage!

Recognition for improving New hampshire parking access granted, but self-advocacy needed

Congratulations to Chapter Board of Trustee member Ken Jones and Guy Woodland, NH Association for the Blind, for receiving an Honorable Mention in the 2013 NH Governor’s Accessibility Award, project category. Both activists partnered with the Lions Club International to promote and install Access Aisle “No Parking” signs. The signs were designed by the DMV with input from MS Activist Judy Hallam. NH laws already require no parking in the striped access aisle space, but these signs serve as a reminder not to park in or block this space impeding access to drivers and their vehicles.

Are there access aisles in your community frequently blocked? Urge private or municipal officials to purchase and install these signs. Signs are (12” x 18”): $23.40 each or six for $15.82. Posts: 10 ft - $28.40 or 12 ft - $34.08. To order call the DOC sign shop at 603-271-1874.

Chapter priority legislation S.88 was enacted into law to create a state pilot program to test telemedicine protocols

FEDERAL

MASSAChuSEttS

cont. on next page

ADVOCACy

13

MAINE

MS Action Day at the Massachusetts State house. In May, more than 40 MS activists, chapter staff and members of the board,

and health care professionals gathered for a prep session and met with 36 legislators and staff to advocate for three priority issues: funding for Home LINKS, limits on prescription drug out of pocket costs, and a bill to align the state’s Architectural Access Board (AAB) more fully with the Americans with Disabilities Act. The Governor proclaimed MS World Day in the Commonwealth.

NeW HaMPSHire

VERMONT

JOIN THE MOVEMENT: MSnewengland.org14

ADVOCACy cont. from page 13

ADVOCACybE A DIGITAL MS ACTIVISTIn 2012, MS activists sent tens of thousands of emails, placed hundreds of phone calls, and made hundreds of in-person visits to members of Congress asking for their support on issues important to people with multiple sclerosis and their families. And now there are more ways for MS activists to connect—online.

Driving changeDigital MS activists—like all MS activists—want to drive change and do so by amplifying their voice and connecting with elected officials over social media.

At www.nationalMSsociety.org/digiMSactivist, learn how to share your story, connect with other MS activists and build relationships through social media and email. The webpage includes ways to:

• Get informed. Become part of the MS Activist Network. Receive e-newsletters and Action Alerts about important pieces of legislation. Send emails with a few clicks of your mouse.

• Rise up. Learn where your elected officials stand. Speak out on issues important to you as a person affected by MS.

• Take Action. Build relationships with elected officials by posting on and liking their social media pages and by thanking them on Facebook or Twitter for their supportive actions.

• Recruit. Encourage others to join the movement by directing them to our video at ntl.ms/youCanbeAnMSActivist, or to www.nationalMSsociety.org/digiMSactivist.

Become a digital MS activist and help shape the conversations today that will drive change tomorrow—we promise you, people will listen! n

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 Michelle.Dickson@nmss.org.

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 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, please contact virginia.morse@nmss.org or 781-693-5140.

Resources to find Clinical Trials n ClinicalTrials.gov n CenterWatch - www.centerwatch.com n NARCOMS - www.narcoms.org n MS International Federation - www.msif.org n CISCRP - www.ciscrp.org n Research Match - www.researchmatch.org n MS Discovery Forum - www.msdiscovery.org n National Institutes of Health - www.nih.gov/health/clinicaltrials n Patients Like Me - www.patientslikeme.com/clinical_trials

administered outside a medical setting. The goal is to provide even greater access to care for people in rural and underserved areas.

MS activists participated in a gala for the 23rd signing of the ADA in Burlington. MS activists continue to participate in efforts through the Burlington Advisory Committee on Accessibility and applaud progress to date. n

15 JOIN THE MOVEMENT: MSnewengland.org

Volunteer Volunteers

Classified Ads FREE: Electric Scooter. Hardly used. Needs new batteries and possibly some mechanical work. You pick up. Gorham, Maine. 207-712-6993 btwn 9 am - 6 pm.

SALE: InvoCare - Tracer IV Wheelchair. Adjustable arm rests, stir-ups, wheelie bars & safety belt. Never used. Top of the line. Sells for $650. 450 lbs limit, $250 OBO. Jim at 651-263-3458

FREE: Invacare wheel chair Model TDX SI. In perfect condition except battery. Interested in giving it to someone who can use it. Rich 508-788-1763 or

richwalcott@rcn.com.

FREE: Invacare Storm Series Power Wheelchair TDX3. 10 years old. Works great! fmoniz@cox.net 401-624-1640 (after 5 p.m.)

FREE: Pride Mobility Power Wheelchair. Quantum 06 Edge Series. 2 years old. fmoniz@cox.net 401-624-1640 (after 5 p.m.)

SALE: Ortho-Kenetics powered Lift. Mounts to back of van. Adjustable. Used and worn, but works perfectly. $135-firm. Joe: jc965@comcast.net

FOR SALE: Evolv Easy stand w/tray.

Located in central Maine and will deliver it for an extra fee. $750.00 firm you pick up. 207-991-7337.

SALE: 2003 Blue Dodge Caravan full power fold out ramp, door and kneel Braun Entervan only 28,000 miles. Conversion, Power interior options. Steve 774-225-1727

FREE: Bruno Scooter Hoist, most suited for a van. Mike 207-591-7028.

To post your free ad, contact wendy.golden@nmss.org. To see the latest ads, visit the classified ad section at www.MSnewengland.org.

Still Time to Volunteer in 2013 This spring, more than 2,500 individuals volunteered at our 34 one-day fundraising walks and bike events in Maine, Massachusetts, New Hampshire, and Vermont. A big THANK YOU goes out to each and every volunteer who helped to create a world free of MS.

Autumn in New England is an amazing season, and in 2013 the Greater New England Chapter is offering 13 Walk MS events, Bike MS: Bike & Hike the Berkshires, and the Boston Volvo Village 5K Road Race that we know will attract participants and volunteers alike.

Volunteering at one of our events can take you from the shores of Cape Cod to the vibrant colors of the Berkshires. You’ll see spectacular scenery, winding country roads, and quaint towns rich with history, all while helping each participant in their collective journey to find a cure for multiple sclerosis. Please consider joining the movement today to help create a world free of MS. Volunteer at one or more of the many great fall events; dates and locations are listed below.

Event volunteers help our staff set-up, check-in and register participants, man rest stops, provide first aid and route support, take photographs, cheer at the finish line, and a whole lot more. Volunteers are vital to the work of the National MS Society and your valuable skills and support truly make a difference for people living with MS.

For questions about volunteering or to register to volunteer this fall contact Brenda Barbour at brenda.barbour@nmss.org, Emily Flanders at Emily.flanders@nmss.org, or in Maine contact Shawna Chigro-Rogers at shawna.chigro-rogers@nmss.org. To register online visit our website at www.MSnewengland.org and click on the event that interests you. It’s that easy!

Be the change you want to see in the world – volunteer today!

SATURDAy, SEPTEMbER 7 Walk MS: Brewster, MA

SATURDAy, SEPTEMbER 21 Walk MS: Sturbridge, MA Walk MS: Gorham, NH Bike & Hike the Berkshires, Hancock, MA

SUNDAy, SEPTEMbER 22 Walk MS: Calais, ME

SATURDAy, SEPTEMbER 28 Walk MS: Belfast, ME Walk MS: St. Johnsbury, VT Walk MS: Bennington, VT Walk MS: St. Albans, VT

SUNDAy, SEPTEMbER 29 Walk MS: Falmouth, MA Walk MS: Greenfield, MA Walk MS: York, ME NH Journey of Hope, Concord, NH Walk MS: Keene, NH

ThURSDAy, NOVEMbER 28 Boston Volvo Village 5K Road Race, Brighton, MA

Moving Toward a World Free of MS

16 JOIN THE MOVEMENT: MSnewengland.org

Fundraising

Bike MS this Fall

Fashion Plates

Boston Volvo Village 5K Road Race

Dinner of Champions

November 8, 2013 11:00 a.m. - 1:30 p.m.

Sheraton Boston Hotel

Boston, Massachusetts

MSnewengland.org

bike & hike the berkshires

Register at bikeMSgne.org

Jiminy Peak Mountain Resort Hancock, Massachusetts

September 21

Explore the beauty of the Berkshires in the fall with 25- and 50-mile bike routes, or the 100 mile Mt. Greylock

Challenge. Hike one of two hiking routes on Mt. Greylock.

Thanksgiving Day November 28, 20137:30 a.m. registration

9:00 a.m. start

boston Volvo 75 North beacon St.

brighton, Mass.

$20 online registration before Nov. 16

$25 on-site registration

Register at runMSgne.org

Journey of Hope

JOIN US ON A JOURNEy OF hOPEFunds raised from Journey of Hope are distributed directly to participating MS Clinical Centers that are formally affiliated with the Chapter.

September 29New Hampshire Journey of Hope, ConcordTo Register: walkMSgne.org, 800-344-4867, walkMSgne@nmss.org

Hilton Burlington Hotel, Burlington, VTTuesday, September 17, 2013

5:30 PM - 9:30 PMHonoring:

Jeffrey L. Davis with the Hope Award

blue Cross blue Shield of Vermont with the Community Champion Award

Tickets: $150 per person.

Contact Adele Forbes: 802-871-5231 or adele.forbes@nmss.org

17 JOIN THE MOVEMENT: MSnewengland.org

Fundraising

Walk MS this Fall!

Fundraising

Walk with us this Fall 2013Register at walkMSgne.org

MaineSeptember 22

Calais Wabanaki Cultural Center

September 28 Belfast

Front Street Pub

September 29 Caribou

Cary Medical Center

York York High School

Vermont

September 28 Bennington

Vermont Veteran’s Home

St. Albans Collins Perley Sports

Complex

St. Johnsbury St. Johnsbury School

MassachusettsSeptember 7

Brewster Cape Cod Sea Camps

September 21 Sturbridge

Sturbridge Town Common

September 29 Falmouth

Mullen-Hall School

Greenfield Greenfield Community

College

New hampshire

September 21 Gorham

Gorham Common

September 29 Keene

Wheelock Park presented by:

REGISTER AT

CLiMBMSGNe.OrG

OR CALL 800-344-4867

Saturday March 1, 2014

ClimbNew

England’s Tallest

building1,220 Steps

Closer to a Cure

Advances in research are a top priority for people living with MS and their families. Although significant progress has been made, current therapies don’t work for everyone, nor do they offer the solutions

necessary to end MS for everyone, forever.

The Society is the very best investment to find MS solutions: n Funds more MS research than any patient group in the

world n Drive global collaboration to speed research progress n Paved the way for 13 FDA-approved MS therapies n Lead global efforts in gender, genetics and nervous

system repair (including myelin repair), and now progressive MS

n Best scientific review and management process n Set the standards in diagnosis, symptom management,

stem cell research, clinical trial strategies, complementary and alternative medicine, pediatric MS and rehabilitation research

n Added more than 800 scientists to the MS research field

Make your gift to the NOW campaign and encourage others to do the same.

For more information or to make a gift, please contact Jonathan Nierman at 781-693-5150 or jonathan.nierman@nmss.org

NOW IS ThE TIME TO TAkE ACTION

Moving Toward a World Free of MS

18 JOIN THE MOVEMENT: MSnewengland.org

Fundraising

• In its third year, Ride Bar Harbor returned on Saturday, May 18 with 93 riders working towards raising $35,000.

• Our biggest Bike MS event, the Cape Cod Getaway was held June 29-30. More than 2,100 cyclists road from UMass Boston, spent the night at Mass. Maritime in Bourne and finished in Provincetown, working towards the goal of raising $2.6 million.

• Our fifth annual Minuteman Ride was held on July 20 with it’s biggest turnout yet, raising almost $160,000.

• Green Mountain Getaway was held on August 3-4 at the new location of UVM in Burlington, Vermont, riding along Lake Champlain and crossing the new Crown Point Bridge.

• Great Maine Getaway was held on August 10-11 at the University of New England. Over 380 cyclists were excited about the new coastal route, which featured the best of Maine.

Minuteman Ride

Ride Bar HarborRide the Vineyard

Great Maine Getaway

Cape Cod Getaway

Green Mountain Getaway

bike MS: Ride the Vineyard, Ride bar harbor, Cape Cod Getaway, Minuteman Ride, Green Mountain Getaway, and Great Maine Getaway.

Sign up today to Bike MS: 2014 at bikeMSgne.org!

research

19 JOIN THE MOVEMENT: MSnewengland.org

Community Fundraisershike to the highest Paul Grugan of New Hampshire has MS. Help support Paul as he hikes the highest mountains in the lower 48 to raise money for the National MS Society. He’s already conquered New Hampshire. On September 3, Paul plans to summit Mt. Whitney in

California. All proceeds go directly to the Society. Visit: nationalmssociety.org, click Donate at the top, scroll down and click ePledge, and enter Paul Grugan.

Pep’s Peddlers Golf TournamentFriday, September 6 • 12:30 Shotgun.

Hillview Country Club, 149 North St., North Reading, MA

Hosted by Cape Cod Getaway team Pep’s Peddlers. Contact: John Douglass 617-257-2701 or John Pipitone 781-258-7759.

Crash Safely: Benefit for the National MS SocietySeptember 13, 14, 20, and 21

OBERON, Davis Square Theatre, and Midway Cafe

This year, Crash Safely takes place over four nights, at three venues in Boston, Cambridge and Somerville, MA! Local bands and musical performers, raffles, and silent auctions. For more information, contact anichols@crashsafely.org.

beard CompetitionSeptember 21 • 7:00 p.m.Diva’s Nightclub in Northampton, MAA winner in each of seven categories will receive a handmade trophy. There will also be a 50/50 raffle, as well as individual item raffles and merchandise for sale. All proceeds go to National MS Society, Greater New England Chapter. For more information, contact Bert Mayer, President/Founder of the Boston Beard Bureau at HBMayer@gmail.com.

MS PLANE PULL June 29, Portland, Maine. Emcee Shannon Moss called the first team to the line, gave the count down and with that the ninth annual MS Plane Pull took-off! Nineteen teams took the challenge, pulling FedEx jet Carah down the Portland Jetport runway and raising over $29,000. Thank you to Portland Jetport and FedEx for their support. Join us for the tenth annual MS Plane Pull on June 7, 2014!

$1 MILLION REASON TO RIDEBike MS team “Reason to Ride,” representing EMD Serono, has surpassed the $1 million mark in fundraising. Since 2006, the team has raised a cumulative $1,062,018. Captain Scott Sherman, Senior Director, Business Operations, Neurodegenerative Diseases and Rheumatology at EMD Serono, has led the team to eight years of impressive fundraising and rider recruitment. In 2013 alone, the team raised nearly $124,000, and fielded a team of 147 for Bike MS: Cape Cod Getaway. Reason to Ride team members can be found at all eight Bike MS rides offered by the Greater New England Chapter. EMD Serono’s President, James Hoyes, is also engaged in the Society’s mission as a Chapter Trustee. In addition, EMD Serono and their partner, Pfizer, sponsor the Bike MS: Cape Cod Getaway ride, increasing total team dollars to more than $1.3 million. Thank you EMD Serono for your leadership in Bike MS!

Fundraising

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Calendar

Sept. 1 - The Labor Day 5K for MS, Raynham, MA

Sept. 5 - MS REACH: Town Hall Meeting, Bennington, VT

Sept. 6 - Pep’s Peddlers Golf Tournament, No. Reading, MA

Sept. 7 - Volunteer Training Conference, Topsham, ME

Sept. 7 - Walk MS: Brewster, MA

Sept. 7-8 - Cape Cod MS Challenge Walk

Sept. 10 - Can Do MS Webinar: Social Security

Sept. 13-21 - Crash Safely: Benefit for the National MS Society

Sept. 14 - Beyond Diagnosis: Moving Forward

Sept. 17 - Dinner of Champions, Burlington, VT

Sept. 20-22 - Abilities Expo, Boston, MA

Sept. 21 - Volunteer Training Conference, Concord, NH

Sept. 21 - Beyond Diagnosis: Moving Forward

Sept. 21 - Bike MS: Bike & Hike the Berkshires

Sept. 21 - Walk MS: Sturbidge, MA and Gorham, NH

Sept. 21 - Beard Competition, Northampton, MA

Sept. 22 - Walk MS: Calais, ME

Sept. 26 - Everyday Matters: Living Your Best Life with MS, Wells, ME

Sept. 28 - Volunteer Training Conference, Waltham, MA

Sept. 28 - Walk MS: Belfast, Maine and Bennington, St. Albans, and St. Johnsbury, VT

Sept. 28 - Picnic on the Penobscot, Medway, ME

Sept. 29 - MS Journey of Hope, Concord, NH

Sept. 29 - Walk MS: Keene, NH; Falmouth and Greenfield, Mass.; and Caribou and York, ME

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