CALENDAR OF EVENTS FALL2004 OCT 14 - EVALUATING YOUR APRIL 17, 2005 - MS WALK: SEPT 27-OCT 4 - FINANCIAL HEALTH: Chapter Portsmouth MS GLOBAL: MS Bike Tour, Office, Waltham APRIL 18, 2005 - Geneva, Switzerland to Milan, Italy OCT 15 - DEC 17 - MS YOGA: MARATHON STRIDES OCT 2 - WHEELCHAIR/ Fridays., Newton, Mass. AGAINST MS: Marathon, SCOOTER CLINIC: Pittsfield OCT 16 - WHEELCHAIR/ 26.2 miles, Hopkinton to Boston OCT 2 - MOVIN WITH MS: SCOOTER CLINIC: APRIL 30, 2005 - MS WALK: Exercise intro, Attleboro, Mass. Westborough, Mass. Berkshires (Tanglewood), Gorham NH, Hyannis OCT 2 - 9TH ANNUAL OCT 17 - MS & THE BENE- CELEBRATION OF LIFE: FITS MAZE, HOW TO FET MAY 1, 2005 - MS WALK: Leominster Elks Lodge. THROUGH IT: East Sandwich Greater Springfield Entertainment by The Perfect OCT 21 - INVESTMENT MAY 14, 2005 - TOUR THE Reflections and Bruce Jacques. PORTFOLIOS & TAX PLAN- VINEYARD: MS Bike Tour, Contact Letizia - 978-345-8659; or NING: Chapter Office, Waltham Martha’s Vineyard Sal: [email protected] OCT 23 - ANNUAL MEETING JUNE 25-26, 2005 - GREAT OCT 4 - DEC 16 - ADAPTED & WATERMAN RESEARCH MASS GETAWAY: MS 150 Bike AQUATICS: Mon. & Thurs., UPDATE: Wyndham Hotel Tour, Boston to P’Town, and a boat Newton, Mass. Westborough, Mass. ride home! OCT 5 - DEC 7 - ADAPTED OCT 28 - WOMEN’S HEALTH SEPT 9-10-11, 2005 - MS AQUATICS: Tues., Stoughton NIGHT: YWCA Worcester CHALLENGE WALK: 3 days ... OCT 5 - NOV 9 - FATIGUE, NOV 3 - WOMEN AGAINST 50 miles ... closer to a cure. TAKE CONTROL: Derry, N.H. MS: Dinner, Marriott, Burlington Cape Cod, Mass. OCT 7 - INTIMATELY SPEAK- NOV 3 - PREGUNTELE A SU SEPT 24, 2005 - BIKE & ING: LET’S TALK ABOUT BLAD- DOCTOR: Lawrence, Mass. HIKE THE BERKSHIRES: MS DER & SEXUAL FUNCTION: Bike Tour. Mt. Greylock Challenge, APRIL 9, 2005 - MS WALK: Fall Foliage Tour, Greylock Hike Taunton, Mass. Cohasset, Easton, Marblehead, OCT 7 - NOV 18 - FATIGUE, Newburyport, Northampton, TAKE CONTROL: Danvers, Mass. Westport, Worcester Upcoming Event: MS Dinner of Champions OCT 12 - NOV 16 - GATEWAY APRIL 10, 2005 - MS WALK: TO WELLNESS: Tues., Boston, Concord Mass., Plymouth Leominster, Mass. MS SUPPORT GROUPS APRIL 16, 2005 - MS WALK: visit www.msnewengland.org, Manchester, Nashua or call 1-800-493-9255.

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From the President 2 Ask the Expert 5 Advocacy 8 Annual Meeting Notice 2 Research Advocate 6 Volunteers 9 MS Scholarships 3 Research Updates 6 Fund Raising News 10 Absentee Ballots 4 Classified ads 7 Calendar of Events back

Central New England Chapter

Nearly 13,000 people in & have MS... This is why we’re here! Get closer! Massachusetts First Intimacy rejuvenates relationships affected by MS Lady speaks out by Christine St. Laurent about life with MS ho hasn’t heard the jokes that iagnosed in 1998 shortly before all women want to do is cud- she and her husband, Mitt, trav- dle? All persons have a need eled to Salt Lake City to manage for touch, which is crucial to the Winter Olympic Games, Ann W our intimate relationships. D Romney has exemplified the courage of 3 While all of us relate to the stresses of many who live with MS. Returning in 2002 everyday life in different manners, few for the gubernatorial campaign, she is would say they need less support from learning to balance the demands of life as important persons in their life. First Lady of Massachusetts with the limi- It is not uncommon for a woman with tations of life with multiple sclerosis. MS, who is experiencing physical changes, With her MS in remission, and a self- to feel less desirable and less interested in MS Scholars physical intimacy. Some women may be so styled mix of complementary therapies, involved in their MS care and expending including a refreshing exercise regimen of so much energy staying well, they have dressage horseback riding, Ann has Artist with MS no energy left for a relationship. This embraced the Central New England 5 pulling back is a frequent occurrence. Chapter and the MS Challenge Walk However, if a woman continues to as one of her main social causes. Also isolate herself from her partner it dedicated to the United Way and to can erode a vital source of com- children’s issues, for the second year fort, support and rejuvenation. in a row, she is serving as the MS Relationships are not stag- Challenge Ambassador. nant, but ebb and flow. When “These individuals who walk 50 individuals start a relationship miles in three days, and raise they must work to an thousands of dollars are an inspi- identity as a couple. Those in ration to me, as a person with their 20s and 30s are estab- MS, and to everyone else who lishing themselves as indepen- lives with the uncertainty and dent adults, and in their often disabling effects of the careers, and are often finding disease,” said Mrs. Romney. their physical place in the world. “The MS Challenge Walk Couples can very easily become so is a great opportunity for any- busy that they move further away one who has the strength and Courtesy of the Worcester Telegram & Gazette Candia Kid Cares 8 from each emotionally and physical- energy to travel 50 miles by foot to ly, relying on the constancy of each other, enable the Chapter to meet the needs of rather than keeping connected to each those who do face great adversity from other’s needs, wishes, and desires. their MS, and to simply be the most reli- 11 Couples may think they know exactly able source of MS information around. what their partner wants and how they “Many people who have MS keep it a perceive the world. It is important to com- secret because they're afraid of what might municate with each other about what is happen to their job. But there's a greater happening in the relationship, and if it understanding these days that multiple meets each other’s needs. When this does sclerosis doesn't always mean you'll be dis- Tyler Rides to Gold not occur, partners often start to take the situation personally, creating further ten- abled; in fact, most people with MS contin- sion and division. Working on the relation- ue working without any special accommo- ship enhances all aspects of the couple’s dations. The Challenge is not only a fund life. Emotional intimacy sets the stage for raising tool, it’s also a way to educate peo- a fulfilling intimate relationship. ple about the disease.” Women’s health resources on page 4 See MS Challenge Walk info page 11 Central New England Chapter FROM THE PRESIDENT FALL2004 his issue of MSConnection is dedicated to the theme of women’s health issues related to T multiple sclerosis. Reading our cover story about Massachusetts First Lady Ann Romney, and seeing the extensive and invaluable media coverage 800-493-9255 that she received for speaking out about her life with A publication of the National multiple sclerosis, highlights for me the role that Multiple Sclerosis Society, women play in heightening awareness and under- standing of multiple sclerosis and the mission of the Central New England Chapter National Multiple Sclerosis Society. Arlyn White, 101A First Avenue, Suite 6 Mrs. Romney’s public position quite naturally Chapter President & CEO Waltham, MA 02451-1115 attracts media attention. She has embraced that www.msnewengland.org notoriety graciously, and used it to reach out to others who live with the disease, and to promote the MS Challenge Walk and the work of the Chairman Chapter. Ann’s message: find something you love and do it for yourself. S. Woodworth Chittick That sentiment is shared by Chapter member Wendy Booker, who recently became the first woman who has MS to climb Mt. McKinley (pg. Chapter President & CEO 12). Wendy’s story teaches others to find their inner strength and the Arlyn A. White motivation to overcome the everyday mountains created by MS. The list of courageous women spreading the message of hope is long. MSConnection Editor Dr. Linda Buchwald of Mt. Auburn Hospital will soon be inducted into the Steven R. Sookikian National MS Society’s Volunteer Hall of Fame for her outstanding work on The National Multiple Sclerosis behalf of the Chapter’s education, support, and advocacy programs over Society does not endorse prod- many years. A speaker at the 2004 MS Lobby Day on Beacon Hill, Dr. ucts, services or manufactur- Buchwald’s patients motivate her to do everything she can for the mission, both inside and outside of the clinic. Cathy MacPherson, an LPGA ers. Such names appear here Teaching Professional who has a friend with MS, engaged 20 of her col- solely because they are con- leagues to lend their time and talent to the recent Link Up for MS, pro-am sidered valuable information. golf tournament. And, NASCAR driver Kelly Sutton, who has MS, recently The National Multiple Sclerosis met with media in Boston and will race in New Hampshire in September. Society assumes no liability for Women’s issues need women’s voices, and there are many more the use of any product or ser- women in our Chapter who give just as much, and who deserve equal vice mentioned. credit for touching the lives of countless others. Information provided by the Central New England Chapter Annual Meeting Society is based upon profes- Saturday, October 23, 2004 • Noon to 3 PM sional advice, published experi- Wyndam Hotel Westborough, Mass. ence and expert opinion. Chapter members gather to hear a report on the activities and accom- Information provided in plishments of the past year by outgoing Chairman S. Woodworth response to questions does not Chittick. And, incoming Chairman Ronald Schram presents his constitute therapeutic recom- vision for the coming year. $10 registration fee required by October 15. mendations or prescriptions. Contact: [email protected], 1-800-493-9255 x127. The National Multiple Sclerosis Stanley F. Waterman Research Update Society recommends that all The Image of MS: A View through MRI questions and information be Nancy D. Richert, MD, PhD, discussed with a personal Staff Clinician, National Institutes of Health, Bethesda, Maryland; Assistant Clinical physician. Professor, Children's National Medical Center, Washington, DC What does an MRI really tell us? Dr. Richert explores MS through the The National Multiple Sclerosis study of Magnetic Resonance Imaging. Learn how MRI can help chart Society is dedicated to ending the course and treatment of MS, from diagnosis to measuring change the devastating effects of MS. during the natural course of the disease. Dr. Richert also examines what the current therapies achieve in altering the course of MS. © 2004 National Multiple Sclerosis Society, Annual Meeting Notice Central New England Chapter The Annual Meeting of Members is held to elect the Board of Trustees and to consider the Annual Report of the Board and the Treasurer’s Report of the Chapter accounts. Nominations to the Board of Trustees should be sent to the address below by October 1, 2004. The If you have a relapsing Nominating Committee, prior to submission for election, will review form of MS and are not nominations. Please provide the name, address, phone number, and currently using AVONEX, brief background of the nominee, as well as your name, address, and BETASERON, COPAXONE, phone number. If you are planning to attend, or if you cannot attend or REBIF, the National but would like to vote by proxy, please fill out the form below: — - — - — - — - — - — - — - — - — - — - — - — - — - — - — - — - — - — - — - — - — Multiple Sclerosis Society Name ______Phone ______recommends that you talk Address ______with your doctor about the __ I will attend right course of treatment __ I will not attend, and I assign my proxy vote to Chapter Chairman S. Woodworth Chittick for you. __ I will not attend, and I assign my proxy vote to: ______

MAIL TO: NATIONAL MS SOCIETY, 101A FIRST AVENUE, SUITE 6, WALTHAM, MA 02451-1115 2 Toll-Free Number: 1 800 FIGHT MS PROGRAMS Young Women’s Boston Support Group by Judy Cotton n a recent Saturday What I found that rainy after- er in cyber space and in-person to afternoon, I drove to a noon at a large, secluded table in discuss issues unique to women Boston area restaurant the rear of a quiet restaurant was with MS – disclosure at work, to to meet with the mem- a group of women, ages 22 and friends, families and partners, O bers of the Young upward, living with MS anywhere intimacy, and motherhood. They Women MS Boston Group. This from one to 11 years. They are attend social events together, and group meets monthly from 2 PM diverse: members are single, have even helped two members onward at different restaurant straight, gay, married, divorced, move. venues in the Metro Boston area, and some are mothers. What real- As one group member puts it: close by public transportation. In ly defines these women, though, is “Women are unique in that they addition to the 16 or so women their determination to continue on look at the world differently than who usually attend the monthly the paths they have chosen for men…most women tend to be meetings, there are a total of 35 themselves, to remain positive, to superwomen, thinking they can do women who are members of the have “attitude and drive.” As Amy everything, and putting everyone group’s e-mail listserve. says, “It’s all about goals.” first…I think it is really important Founded by Amy Carrier one The group members help and for…women with MS to realize year ago, the group’s purpose is to support each other in a myriad of that perfection doesn’t mean provide an opportunity for social ways. They exchange resources, killing ourselves to be perfect…we interaction and support for young, information and opinions in such are each perfect in our own ways, professional women in Boston who areas as nutrition, exercise, legal and we need to be able to ask for are living with MS. Amy, newly issues, travel, upcoming events, help and slow down when we need diagnosed at age 26, and a friend medical treatment and options, to…oh, and of course, live each also dealing with a recent diagno- insurance and career issues and day to the fullest.” sis, wanted to “do it our own way.” managing personal relationships. For further information about With support from the Central As one member states, “It’s lonely YWMSB,visit: New England Chapter, Young having MS.” This isolation is at http://health.groups.yahoo.com/gro Women MS Boston, or YWMSB least partly assuaged by member- up/YoungWomenMSBoston/ as members of the group call ship in this tight knit, vibrant themselves, was born. group of women who come togeth-

Margaret also learned that year that federal government. Up to now, she Local MS she was going to have a child. has had to meet numerous chal- Scholarship Awards Divorced five years later, she lenges stemming from her mother's worked in the insurance business to MS, diagnosed on Mary's third birth- ive individuals from the support her son, now in college. day. Characteristically, Mary and Central New England "MS knocked me down, but I always her family have managed to “turn Chapter area were each picked myself up again because I hurdles into hope.” It is Emerson's F awarded $3,000 scholar- had to keep going for my son.” Her words that sum up her feelings ships by the National MS Society personal motto sums up her philoso- about life's challenges: “Bad times Scholarship Program for their acad- phy of life well: Carpe Diem - Seize have scientific value. These are emic performance, participation, the Day - “and get the most that life occasions a good learner would not leadership, citizenship, and demon- and MS is willing to give me.” miss.” stration of financial need. KEVIN MURPHY SARAH YANES CHRISTOPHER HANOWITZ FATHER HAS MS MOTHER HAS MS MOTHER HAS MS 4.0 GPA, HIGH SAT SCORES FATHER WITH PARKINSON'S SAT TOTAL SCORE 1520 STRAIGHT “A” STUDENT Kevin's talent and intelli- Growing up as a caregiv- gence has propelled him Sarah was accepted early to the er to his mom with MS, to study computer engineering at Univ. of Pennsylvania's Wharton Christopher developed a dual pas- the Rochester Institute of School of Business. Her teachers sion for science and for medicine. A Technology in the fall. He wants to and counselors alike laud her as an future physician, he wants to con- be on the cutting edge. Kevin's outstanding student who chooses duct MS research to "directly con- commitment and direction comes the most advanced courses and tribute to the overthrow of the tyrant from time spent with his dad, playing aces them all. Sarah's fierce deter- disease itself." Fighting alongside catch and enjoying “the wonders of mination to succeed in life stems her, Christopher accompanies his baseball.” Kevin says, “I learned from watching and supporting her mom to all medical appointments, about girls, happiness, friendship, mother. Although diagnosed over administers her weekly injections maturing as an individual, growing 13 years ago, her mom still works and offers ongoing support and up and becoming a better person. full-time as an oncology nurse. She comfort. At the same time, he has My father explained this all to me, says her mother's MS has made her maintained a high standing in his through the powers of baseball.” (Sarah) a stronger person and has class (top 5 percent) and has nearly helped to shape her character. perfect SAT scores. MARY WALL MOTHER HAS MS Scholarship applications open MARGARET MARSHALL HIGH SAT SCORES January 1, 2005, and close mid- PERSON WITH MS February. Visit the Chapter website Mary is on her way to GED for details. A gift from Chapter college to study political Trustee Arthur Collias funded the A single parent, Margaret had to put science and U.S. history, and to five local awards, plus four from her own dreams on hold. obtain a position someday within the Diagnosed with MS at age 25, other chapters. 3 Visit our Website at: msnewengland.org PROGRAMS FALL2004 If You Don’t Vote, You Don’t Count! Absentee ballots offer people with place due to a physical disability. MS Medicare disabilities an alternative. The local election official will Self-Injectible There has never been a more automatically mail an application important time to vote! The 2004 for an absentee ballot for all elec- Demonstration Presidential election is predicted tions in a calendar year. You must to be the closest in history. NOW sign the application and send it Project - Act is the time for the 50 million back to the election official. Now! Americans with disabilities to Include your name; address as Enrollment ends September 30 for exercise their right to vote at an registered; ward and precinct (if the chance to receive coverage for accessible polling place. 38 percent you know them); address where any of the four immuno-modulating of all people with disabilities are you wish the absentee ballot sent; injectible drugs, at home or in a not registered to vote. In 2000, 41 in a primary, the party ballot you medical setting, through percent of Americans with disabil- want; and your signature. Forms December 2005. ities voted vs. 51 percent of all are also available online. Medicare pays for 95 percent adults—a difference of 10 million. In N.H., request the absentee of the drug cost after you meet a Don’t let disability ballot application from the town or deductible. Smaller cost sharing become impossibility! city clerk, or submit a request in and financial assistance for those Both Mass. and N.H. allow people writing, including your name, vot- with low income. whose disabilities make trans- ing address, mailing address and For details and application, go portation difficult or impossible to your signature. Absentee ballots to www.nationalmssociety.org, or use absentee ballots. You may also are available from your town or call Michelle Dickson at 1-800- be able to register by mail. city clerk 30 days prior to an elec- 493-9255 x146. Massachusetts instructions are tion. Clerks may accept completed at the Secretary of the Common- absentee ballots submitted in per- wealth Elections Division website: son until 5 PM the day before an www.sec.state.ma.us/ele/eleifv/how election or until 5 PM on Election abs.htm. You may also call them Day if received through the mail. at 1-800-462-VOTE, or send an If you are not already regis- email to [email protected]. tered, you should request an If you’re permanently disabled, absentee voter registration affi- Donate your used you may vote at home by applying davit and a standard voter regis- vehicle to the to your local election office. File a tration form from your town/city letter from your doctor with the clerk. The affidavit must be wit- National Multiple town or city clerk or election com- nessed and returned with the reg- Sclerosis Society! mission. The doctor must state istration form to the clerk. (www. call: 1-877-672-8864 that you are permanently unable sos.nh.gov/vote.htm#ABSENTEE). or visit: www.msnewengland.org to cast your ballot at the polling

wheelchair, and come to the Red my fourteenth birthday). To see Auntie Debbie Sox game with me. Even though her dying was the worst day of my (Nov. 15, 1957-April 17, 2004) she was in a wheelchair, she still life. My Aunt Debbie [Caulfield, Everett, never stopped living a normal life In a way though, I was kind of Mass.] is the best person who ever like all of us. She used to take me happy for her because I know that lived. When I was little, she used everywhere because not only did she does not have to fight this dis- to always watch me while my she love me very much, but she ease anymore. I know that she is Mom and Dad went to work. One also loved the exact same thing as in a better place now up in heaven day, when she was about 29 years me, sports. At this Red Sox game, and I know that she is watching old, she noticed that her vision I could see the major league base- down on me every second of every was getting bad. She said it felt ball players playing an exciting day. like something was in her eye. game. I could also hear the crack Matthew She decided to go to the doctor of the bat and then the loud snap May 3, 2004 immediately. When she got there, of the other players catching the Period 4 the doctor realized that her ball. I could smell the fresh smell blurred vision was the first sign of of hot dogs, as the vendors walked [Thank you to Chapter member multiple sclerosis, also known as passed us. The day I went to this Gerry Caulfied, who submitted this MS. This specific type of MS that game was the best day of my life, letter, written by his nephew, she had turned out to be one of the not only because the Red Sox won, Matthew, for a school project. And worst cases. As the years went by, but because my aunt was happy, thank you to Matthew for a touching she got worse and worse. She and it made me happy just to see portrait of his brave young aunt.] went from walking normally, to her having a good day. walking with a cane, to not walk- Little did I know, this is the Read ing at all and riding in a wheel- last baseball game that my aunt chair. and I went to because shortly after MSConnection One of my most memorable this game, my aunt became very Online! moments with her was when she sick. She got so sick that she same stories, same resources took me to the Red Sox vs. couldn’t do much of anything any- no paper, no postage Yankees game. It really made me more. Then a couple days after www.msnewengland.org feel very happy that she got up the my last visit with her she died Sign up today! courage to get up, get in her (April 17, 2004, ten days before 4 Toll-Free Number: 1 800 FIGHT MS PROGRAMS

Patients with MS could save 75 New Medicare percent, paying about $4,000 for Ask the Experts Program Saves $ drugs that can cost $16,000 a year. Expert answers “This program is key to proving • Applications Due Sept. 30 • to common questions our long-standing contention that The Centers for Medicare and Is it bad to think of the absorbing up-front medication Medicaid Services is urging MS, costs saves much more in long- possibility of having chil- cancer and rheumatoid arthritis term healthcare expenses,” said Q dren after being diagnosed patients without drug coverage to Linda Guiod, RN, Vice President with MS? apply for a new Medicare demon- for Chapter Programs. “People No, it's not bad to think of stration program. The Medicare with MS typically live normal life having children after you Replacement Drug Demonstration spans. If Medicare and private have been diagnosed with could save thousands in drug costs insurers don’t cover the MS med- A and enable beneficiaries to avoid ications, they could experience MS. Many women with MS inconvenient and sometimes costly more frequent and more severe have had successful pregnancies, repeat trips to their doctor. exacerbations resulting in repeat- and beautiful babies. In fact there “As a doctor, I know how dev- ed and expensive hospitalizations isn't any real reason to think that astating a toll these illnesses can over a period of decades.” MS is bad for the infant before take on patients and their fami- More than 20 drugs are covered birth, or that the mother does any lies. This program can help under the Demonstration. To be worse or better with her MS remove the anxiety about paying eligible, you must be enrolled in because of having been pregnant. for essential medications,” said Medicare Part A and Part B, Of course you have to be careful Centers for Medicare & Medicaid Medicare must be your primary with medications during pregnan- Services Boston Regional Admini- payer, and you may not have com- cy--and that includes a lot of the strator Charlotte Yeh, MD, FACEP. prehensive drug coverage through MS medications. So you would The program is for people who other sources. A beneficiary must have serious illnesses, including also have signed certification from have to review these medicines cancer, multiple sclerosis, and a doctor that they require one of with your doctor at the start of a rheumatoid arthritis. It pays for the drugs covered under the pregnancy. certain drugs and biologicals taken demonstration program. David M. Dawson, MD by the patient at home and that For more information, call 1- replace drugs currently covered Ask your own questions 866-563-5386. Application forms and read more answers online, under Medicare Part B when may be downloaded from the web: www.msnewengland.org administered in a doctor’s office. www.cms.hhs.gov/researchers/dem 50,000 people will be accepted. os/drugcoveragedemo.asp. Artist with MS her generosity to the citizens of the community, and her work has now Young Persons Endures to Create become a part of the permanent his- torical Salem City Hall collection. with MS: orn and A Network for Families raised in Many of her originals have taken up B Beverly, to 600 hours to complete. with a Child or Teen Mass., Judi Amazingly, Judi creates these beautiful works of art despite the with MS Bartnicki was A collaboration between the encouraged and loss of feeling in her left hand, the instructed by her result of multiple sclerosis, diag- National MS Society grandfather, nosed in 2001 following the removal and the Edward of a benign brain tumor. To continue creating her unusual MS Society of Canada Beaulieu, from 1-800-493-9255 the age of four and compelling artwork, Judi’s late to practice art. Her talent was partner, Dave Richardson, discov- impressive and captivated many. ered that she could use surgical She was able to work in many differ- tape to hold the brush or ink pen in her left hand. With pen firmly ent medias, and her technique was Published quarterly by the National MS quite unique. She achieved high secured, Judi’s natural ability takes Society specifically for kids 5 to 10 years old honors in art throughout her school over and guides her arm precisely to and for their relatives who have MS. Games, years, and was awarded a full schol- each and fun, and information too! A great interactive arship to the Art Institute of every point tool for adults and children. on the can- Boston in 1969. Child: In 1976, Judi began experiment- vas. Address: ing with a technique called pointil- Judi’s craft lism, which she continues to pur- continues to City: St: Zip: drive her life sue. Seurat (1859-1891) was the Phone: forward through adversity and hard- founder of this method also known Guardian’s Signature: as stipple, neoimpressionism, or ship that would easily rob the inspi- divisionism. It is the use of tiny ration from others less committed to Child’s age: Grade: points or dots that form together to their creative energy. Relative with MS: create a picture. To view samples of her work, from which she donates 10 percent Mail to: Amber Stalker Judi's work is collected by many. National Multiple Sclerosis Society of the sale price to the Society, visit The City Council of Salem, Mass., 101A First Avenue, Suite 6 www.msnewengland.org. voted unanimously to thank her for Waltham, MA 02451-1115 5 Visit our Website at: msnewengland.org RESEARCH FALL2004 Research Advocate Estrogen and the Immune Attack in MS he first publica- A preliminary Society-sponsored human trial suggested administering tion from the the female hormone estrogen to mice might reduce MS-like autoimmune T Sonya Slifka disease (EAE) activity, but the mechanism for this protection is unknown. Longitudinal Dr. Magdalena Polanczyk and colleagues (Oregon Health and Science Multiple Sclerosis University and others) suggest that estrogen's protective effect in EAE is Study points to chal- due to its encouragement of the immune system's natural regulatory lenges facing persons properties. Co-author Dr. Halina Offner is funded by the Society. who are aging with Estriol May have Nerve-Protecting Benefit Eli Lipcon MS. This first pass only skims the surface of the wealth Investigators from the University of California, Los Angeles, led by Dr. of information beginning to accumu- Rhonda Voskuhl, conducted a small clinical trial of the pregnancy-associ- late from this effort. That wealth is ated hormone estriol in 10 women with MS and previously reported ben- now being made available to quali- eficial signs on immune activity and brain lesion activity in those with fied investigators seeking clues to relapsing-remitting MS. The investigators, whose work was funded in part the impact of MS over time. by the Society, suggest that estriol may have nerve-protecting benefits, in One of the Society's targeted addition to the hormone's impact on immune activity. More studies are research initiatives begun in 1999, needed to confirm these findings and to confirm the safety and efficacy of the Slifka study is following a sample estriol therapy for MS. of the MS population in the U.S. over a long period of time. The seven- Potential of Stem Cells in MS Tissue Repair year, $3.3 million grant was support- Drs. Tamir Ben-Hur (Hadassah-Hebrew University Hospital, ed in part by a gift from the Society's Jerusalem), Jeff Bulte (Johns Hopkins University) and colleagues report- Past Chair, Richard Slifka, and ed success using available human embryonic stem cells to explore their named in honor of his mother. potential to help repair nervous system damage in rodents with multiple Sarah Minden, MD, and col- sclerosis-like disease. The investigators used both mouse and human leagues at Abt Associates, Inc., in embryonic stem cells to create nerve cell precursors for transplantation Cambridge, Mass., collect informa- into the brains of mice and rats with the MS-like disease, EAE. They tion from participants every six magnetically “tagged” the cells and then used MRI to determine that the months via phone interviews. The cells, with inherent potential to develop into functional nervous system recently published study compared cells, moved into the brain lesion sites where tissue had been damaged. the 2,156 persons participating in This project helps validate the utility of a non-invasive means of tracking the Slifka Study, splitting them for cell movement in the brain and thus may become an important tool for the purposes of this study into those future research in tissue repair. It also takes a further step in the process older than, or younger than, 65. of determining the potential of stem cells to assist in tissue repair in MS. Findings included: Uncontrollable Laughing and Crying • Older individuals tended to have pro- gressive disease and to be more severely Avanir Pharmaceuticals announced positive results from a Phase III disabled, and more likely to need help with clinical trial evaluating the safety and effectiveness of the oral drug daily activities. Although 85 percent NeurodexTM (a combination of dextromethorphan and quinidine sulfate) reported having such help, only 40 percent for treating the symptom of “pseudobulbar affect,” a condition involving received professional home care services. uncontrollable laughing and/or crying affecting a small proportion of per- sons with MS and some other disorders, such as ALS, Alzheimer's dis- • Almost all in the older group had health ease and stroke. In a press release issued August 24, 2004, the compa- insurance and 75 percent had prescrip- ny reports that it intends to apply to the U.S. FDA for approval to market tion drug coverage. the drug for pseudobulbar affect based on the results of this and another • Persons in the older group were less trial that studied patients with ALS. likely to have a regular source of MS care or to be using a disease-modifying drug. For a complete report of these and other MS • On average, income was lower in the research studies, call 1-800-493-9255, or visit: older group, and they were more likely www.nationalmssociety.org/research.asp. than those under 65 to live alone. • Despite levels of disability and care Local Clinical Trials Recruiting Patients needs, many older individuals viewed Avonex Combination Study. Randomized, double-blind, placebo-con- their health status and quality of life posi- trolled study to test safety and effectiveness of Avonex in combination tively. with oral methotrexate, intravenous methylprednisolone, or both. Over time, because a wide vari- Seeking 900 subjects with relapsing-remitting MS. Trial locations: Lahey ety of information is being tracked, Clinic, Burlington, Mass., Stephanie Scala, (781) 744-2950; UMass the Slifka Study will permit scien- Memorial Health Care, Worcester, Kristina Marcello, (508) 856-8568; tists to pose a wide range of ques- Newton Wellesley Hospital, Newton, Preethi Fonseka, (617) 243-6517; tions, and allow investigators to Beth Israel Deaconess Medical Center, Boston, Linda Paul, (617) 667- tease out factors that may influence 3742. Funded by Biogen Idec, Inc. disease course. Copaxone and Proventil® (albuterol). Double-blind, placebo-controlled study to determine safety and effectiveness. Location: Brigham and Be a Research Subject! Women's Hospital MS Center, Boston. Seeking 40 subjects with relaps- Current research studies recruiting ing-remitting MS. Funded by National Institutes of Health, National subjects locally are posted online Institute of Allergy and Infectious Disease, Autoimmunity Centers of at www.msnewengland.org Excellence. Sandy Cook, RN, [email protected], (617) 713-2006.

6 Toll-Free Number: 1-800-FIGHT MS PROGRAMS

FOR YOUR INFORMATION FOR SALE: Invacare Pronto M91 with SureStep Wheelchair. New, used ~10 hrs. FOR SALE: Quickie wheelchair, lite blue, FOR SALE: Recliner with lift chair. Charlotte, Tilt/Recline seat, Infinity gel pad seat (~15 ½” quick release wheels, flip-up arms, $250 or 413-527-1986. w x 18” d), flip-away joystick. Asking $7,000, b/o. Philip, 603-623-5697. FOR SALE: Roll Aid, add to your enjoyment valued at $12,000+. Lisa, 781-231-2841. FOR SALE: recliner chair w/lift mechanism of life. Attaches quickly & easily to manual FOR SALE: 1986 Nissan Stanza Wagon. from sitting to standing. Blue, good condition. chair, power to go everywhere. Two Auto. Trans. Zero Force Pwr Str. 6-way $300 or b/o. Charlotte, 413-527-1986. rechargeable batteries & charger, plus own- Driver Seat. Side Door Scooter Hoist. Hand FOR SALE: Amigo Scooter, big seat, fully ers manual. One yr old. $1,500. Phillip, contrls Acc. and Brake. Air Cond. Radio. padded, X-large, $750. Penny, Marblehead, Manchester, NH, 603-623-5697. Drive w/wo hand controls. B/O. Charles, 781-631-4557. FOR SALE: RD Equipment bathroom slide- 781-862-4846. FOR SALE: pair of crutches, copper plated, chair, with commode, paid $2,600, asking FOR SALE: Handicapped accessible van, $20. Two single wooden canes, $5 each. $1,300. Lois, 508-548-7508. 2002 Chrysler, Town & Country, purchased Michael, 781-551-8882. FOR SALE: Bruno Curbsider Lift, Model new Aug. ‘02 for $52K. Only 2,900 miles, asking $32,000. Auto wheelchair ramp, low- FREE: Stair lift, Rascal scooter, and electric VSL 600 Power lift/power swing. Excellent ered floor, has many options, leather seats, scooter lift for a van. South Easton, 508-230- condition. 1998 model, very low use. $2,000. remote start. Dawn , 617-394-0080. 9647. Robin, 781-662-8927. FOR SALE: Invacare Torque SP electric FOR SALE: Modular ramp, 37' long with rail- FOR SALE: Amigo Deluxe RD Scooter. wheelchair. Brand new, used less than 1 hr. ings, originally installed for $4,000. Asking Excellent condition. Used six times, 1997 Tilt/recline seating, Mkiv joystick computer- $800. Iris, 978-486-0082 in Hull. Model. $1,800. Robin, 781-662-8927. ized controls, honeycomb seat cushion, bat- FOR SALE: Chauffeur Electric Mobility FOR SALE: Bathtub slide-chair, asking $25. tery charger, 400lb. shocks. Includes two three-wheel scooter. Burgundy with gray Lois, 508-548-7508. removable trays. Gerry, 617-387-5545. seat. Basket front and back with cane holder. FOR SALE: Rascal scooter, 10 years old, May need new battery. $500 or b/o. Jan, FOR SALE: 2000 Chrysler Ramp Van with hardly used, needs batteries, asking $500. 781-646-3817. transfer seat. 38K miles. Sid (781)784-2803. Lois, 508-548-7508. Full list at www.msnewengland.org Women’s Resources Recent Additions to the Dora The following are available from the Van Houten Family MS Resource Center Lipcon Lending Library WOMEN’S ISSUES: BOOKS: A Woman's Guide to Coping with Disability (Book), Curing MS: How Science is Solving the Published by Resources for Rehabilitation, Mysteries of Multiple Sclerosis, by Howard L. Lexington, Mass. 2000 Weiner, MD. The book gives Dr. Weiner's moving, Sex Hormones & MS (Video tape), with Dr. Rhonda personal account of the long-term scientific quest Voskuhl to pinpoint the origins of MS and to find a break- Women Living with Multiple Sclerosis (Book),by through treatment for those who have the disease. Judith Lynn Nichols Crown Publishers, New York, NY, 2004 Women's Issues in MS (Video tape) The Essential Patient Handbook: Getting the Health Care You Need - From Doctors Who SEXUALITY: Know, by Alan B. Ettinger, MD and Deborah M. All Things are Possible (Book), by Yvonne Duffy Weisbrot, MD has recently been added to our Enabling Romance: A Guide to Love, Sex, and lending library book list and it has also been Relationships for the Disabled (And the People Who updated on the Chapter's website. This book pro- Care About Them) (Book), by Ken Kroll and Erica vides practical advice for those who are dissatis- Levy Klein fied with their medical care, and are looking for In Sickness & In Health: Sex, Love & Chronic Illness ways to get the help they need from their doctors. (Book), by Lucille Carlton This book is a 2004 of Demos Medical Publishing in New York, NY. PREGNANCY: VIDEOS: Mother-To-Be: A Guide to Pregnancy and Birth for Women with Disabilities (Book), by Judith Rogers and But You Look So Well... is a 60 minute docu- Molleen Matsumura mentary (videotape) that portrays in depth the Multiple Sclerosis & Having a Baby (Book), by Judy emotional, social and concrete impact of MS on the Graham lives of four individuals and their families. Participants share their stories of living and striv- NATIONAL MS SOCIETY PUBLICATIONS: ing to cope on a daily basis with this difficult ill- MS and Intimacy ness. Also, a prominent neurologist provides factu- MS and Pregnancy al information on the disorder and shares his views on how people can learn to live their lives WEBSITES: with MS. A 2003 production of GL Productions, http://nursing.villanova.edu/WomenWithDisabilities/ produced, directed, and edited by Audrey Geyer welcome.htm. Created by the Villanova University and Kevin Lindenmuth. College of Nursing to provide women with disabili- To borrow books & videos, ties with information about health promotion call 1-800-493-9255; or http://www.4woman.gov/wwd/index.htm visit www.msnewengland.org National Woman's Health Information Center

7 Visit our Website at: msnewengland.org ADVOCACY FALL2004 VOTE! for passage in informal session. As election day nears, register to vote for local, Other Bill Updates state, and national candidates to help shape the The Governor signed the Housing/Home policies that affect you directly. Persons with dis- Modification Bond Bill (HB 4748), which provides abilities have the right to an accessible polling place funding for home modification loans and funding to in their community. The Help America Vote Act of build accessible housing. 2002 (HAVA) helps to ensure access. For questions The Medicaid Prior Authorization Bill (SB 2224) on voting, polls, and HAVA, contact your State stalled in committee and did not pass. Elections Division. In New Hampshire: The HMO Financial Protections bill (SB867) www.sos.nh.gov, [email protected], or died in committee and did not pass this session. 1-603-271-3242. In Mass., www.sec.state.ma.us/ele, [email protected]/ele, or 1-800-462-VOTE. NEW HAMPSHIRE Registration Deadlines: Massachusetts - Oct. 13 for election held on Nov. 2. New Hampshire - Oct. Long-Term Care 23 mail-in for election, but also same day registra- The N.H. Government Relations Committee is work- tion and voting at poll on Nov. 2. ing to identify the specific long-term care needs of those with MS. Long-term care is the continuum of FEDERAL UPDATES personal care needs from the home to age appropri- ate long-term care residential facilities. A survey is Life Span Respite Act being created, and Committee members will be Constituents of Congressman Charlie Bass, (2nd meeting with self-help groups for direct feedback. If Congressional District) can help the National MS you would like to participate in this survey, it will Society lobby for passage of the “Lifespan Respite be posted at the Advocacy section of the Chapter Care Act of 2003” (S.538/H.R.1083) still in Congress. website, www.msnewengland.org. Rep. Bass serves on the committee where the legis- lation is stalled. This bill would provide grants to Medicaid Waiver states to provide respite services for family care- If you are on Medicaid and have been denied givers, caregiver training, and recruitment of respite approval for a Medicaid Waiver for community sup- care workers. Respite relief is essential for families ports, or if you resided in a nursing home but are caring for a loved one with MS. Contact Rep. Bass now living in the community, the Chapter may be and request this legislation be released from com- able to use your story to advocate to influence policy. mittee. District office: 603-226-0476 142 N. Main St Please contact Michelle Dickson at the Chapter. Concord, 03301 or [email protected] Disabled Parking Laws InsideMS Awareness Campaign The Fall issue of the national magazine, InsideMS, Feedback needed. The Chapter would like to hear features individuals who have benefited from chap- about any outcomes from the new disabled ter advocacy. The Chapter's advocacy for state MS parking/access-aisle/picture-taking law that went funding and its benefit are featured! into effect in January. As the Chapter continues to promote awareness of the new law, we need you to STATE UPDATES help spread the word in your community to ensure it's implementation. If you are willing to contact MASSACHUSETTS local media with public service ads created by the MS Funding Victory! Chapter, or if you wish to write a letter to the editor The FY05 state budget includes $162,368 for the of your local newspaper, please contact Michelle Chapter's Home LINKS program, which provides Dickson at the Chapter office. coordination of benefits and services to those in need. For the fourth year in a row, the Chapter suc- BE AN ADVOCATE cessfully advocated for the inclusion of state budget If you would like to advocate for Chapter priorities and funding to benefit those with MS. Thanks to Senator are not already a member of the Action Alert Mark Montigny (D-New Bedford), who sponsored it Network, please contact the Chapter office via email this year and championed it in the past, and to [email protected], or call Michelle attendees at MS Lobby Day who lobbied for the Dickson at 1-800-493-9255 x146. funding Long-Term Care Study Commission ¿USTED TIENE LA The Chapter's long-term care study bill (SB 799, HB 2071 & 3693) was added to Outside Section 361 of ESCLEROSIS MÚLTIPLE? the Legislature's FY05 budget thanks to Senator ¿Usted tiene un miembro o un amigo Steven Panagiotakis, who met with advocates on MS de la familia con la esclerosis múltiple? Lobby Day. The Governor vetoed the bill, and Chapter advocates mobilized to urge the Legislature Si usted quisiera la información sobre to override the veto. The House did not take this up la esclerosis múltiple, los síntomas, as an override, but the Chapter is working to get it los tratamientos o la investigación, o está passed in informal sessions. Thanks to Rep. Peter buscando recursos en su comunidad como Koutoujian, bill sponsor, for requesting the override. neurólogos, los grupos de ayuda o equipo médico - Disabled Rights of Passage Bill llámenos por favor: 1-800-493-9255. The Chapter's transportation study bill, SB1869 (now SB2306), was not released for the Ways & Estamos esperando su llamada. Means Committee. Chapter efforts continue to work

8 Toll-Free Number: 1 800 FIGHT MS VOLUNTEERS Helping Those Who Help Themselves olunteers work every day with the National Multiple Sclerosis Volunteer Society to provide much-needed help to people managing the Throughout V disease - from offering emotional support, to facilitating innova- tive programs, to staffing exciting fundraising events. But each the Year month, all across the country, one special volunteer group works to help those with MS help themselves: Our Self-Help Group leaders. The Chapter needs volunteers to In the Central New England Chapter alone, more than 50 groups assist each of our departments with meet throughout Massachusetts and New Hampshire. The approxi- their ongoing work. mately 75 volunteer leaders – all with multiple sclerosis themselves – offer many reasons for participating in this vital effort. Tasks range from clerical and admin- “I would have lost something important,” said Lori McDonald, who istrative to professional skills. Your stepped in with a co-leader two years ago to head her Dracut group interests and your schedule deter- when the original leader couldn’t do it any longer. After five years of mine what role you take on. sharing, supporting, and forging important friendships, she couldn’t let One thing is for certain, volunteering the group disband. “I love these people.” Indeed, many self-help group members think of themselves as fami- your time and talent is as valuable a ly. Having a place and a group to go to every month, share concerns, donation as putting cash on the bar- get advice and encouragement, and just be with people who under- rel head. stand the disease can be a lifesaver for many with MS. Below is a list of Chapter depart- “You will find someone in the group who knows what you’re talking ments and a sampling of the tasks about,” Lori said, describing one of the most precious benefits of Self- that volunteers can assist with. Help Group membership: an understanding ear. “And if we don’t, we’ll find someone who does.” Dedicated volunteers like Lori also act as liaisons between their Finance & Self-Help groups and the Central New England Chapter. Initial train- Administration ing at the Chapter office gets leaders familiar with guidelines for run- ning the group, as well as with the resources available to members • Data entry when questions arise. • Filing And they often help those who aren’t yet ready to jump in and join. “I tell them about the group, when we meet, what we’re like. And I • Regional Office support listen,” Lori said. As a group leader, her name and phone number are available to members of the MS Society who want more information, or Chapter Programs just someone to talk to. “I wish I had someone like that when I was first diagnosed.” • Information & Referral Specialist “It was a scary idea, just joining a group,” said Maryann Murray, • Peer Support Counselor who co-leads a Medfield-area group with Nancy McGowan. Afraid the meetings might turn into depressing complaint sessions, she was reluc- • Self-Help Group Leader tant to start the group. “But Nancy talked me into it, and I can’t thank • Action Alert Network her enough. Two years later we have a wonderful group of wise, posi- tive, up-beat people who have nothing but encouragement for each other. They sure showed me how it’s done!” Resource Development And having recently joined the Central New England Chapter as • Marketing Volunteer Coordinator, Maryann is learning even more about people working together – volunteers and staff members – helping each other • Graphic artist fight a devastating disease. • Layout artist “Having MS can be a very lonely experience,” she said. “But being part of the Self-Help Group and working in the Chapter office have • Event planning given me a very different perspective. We’re not alone at all – we’re all • Corporate networking in this together.” Communications MS EMPLOYER • Writing MS Shouldn’t OF THE YEAR • Photography Stand in the Way Nominations • Advertising of an Education now being accepted. • Photocopying THE NATIONAL MULTIPLE Does your boss have Volunteers SCLEROSIS SOCIETY what it takes? • Phone calling SCHOLARSHIP PROGRAM Qualifications include leader- ship policies accommodating • Mailing preparation Application period opens people with disabilities from January 1, 2005 MS and other causes. No matter what your area of interest, and closes mid-February. call Brenda or Maryann in our Visit the Chapter website for details. Call the Chapter for details Volunteer Department, and they will and nomination forms. help you help the National Multiple Sclerosis Society.

9 Visit our Website at: msnewengland.org FUNDRAISING FALL2004 Jacklynn Kuhn is a Kid Who Cares Plymouth Walk Trio Nine year old Jacklynn Kuhn of Candia, N.H., knows Earn Matching Funds why finding a cure for multiple sclerosis is so important. A Walmart store No. 2128 few people in her life, including her own mom, have the donated $1,000 to the Central disease. Over the past three years, Jacklynn has taken it New England Chapter to match upon herself to raise awareness of the disease and edu- the contributions raised by three cate neighbors, friends, classmates, and local businesses local girls who participated in the about the search for a cure. Jacklynn organized a team of family and Plymouth MS Walk. Thanks to Sherry Rebell, friends, Candia Crusaders, that raised more than $18,000 to support the Beverly Hathaway, and Kathy MS Walk in Manchester. Watson, and to the managers and For her outstanding efforts, she was employees of Walmart No. 2128. first recognized by the local Kohl’s store, as part of the Kohl’s Kids Who Care® program, receiving a $50 gift card and a Pillars of Society certificate. Her stature as a community The National Multiple Sclerosis activist was soon acknowledged by the Society recently received a sur- company at the regional level with a Candia Crusaders, Manchester MS Walk prise bequest of $10,000 from the $1,000 scholarship toward her post-sec- estate of a woman we had never ondary education. Ultimately, Jacklynn’s selfless dedication to the fight thanked. Of course, we appreciat- against MS received national attention as one of ten kids, from a pool of ed the gift immensely. It revealed 10,000, who earned an additional $5,000 scholarship. Above and beyond a gracious and generous person -- the scholarships, Kohl’s is donating $1,000 to the National MS Society in someone special. The gift will cer- Jacklynn’s name. Congratulations, Jackie! tainly help us accomplish our mis- sion of ending the devastating Link Up for MS Success! effects of MS. The first annual Link Up for MS Pro-Am But we feel a bit cheated. We Golf Tournament went off without a hitch never had the opportunity to at the Ferncroft Country Club, Monday, express our gratitude to her for August 30. Players and pro’s began arriving such kindness. If only we had at 11 AM. Their bags were whisked away to known, we could have said, their golf carts by pro shop staff. “Thank you.” Raffle ticket sales were great fun. Imagine, stretching your arms We encourage our friends to let out to the side while the roll is unwound across the entire length of us know when they include the your arms and body… tip to tip for only $50! Players and pro’s visited Society in their estate plans. Not with old friends and met new ones. After the lunch repast, Jane only can we express our apprecia- Frost; ranked by Golf Digest as the best teacher in Massachusetts, tion, but we can also make sure treated everyone to a golf clinic. Armed with helpful tips, the golfers that they are kept up to date with headed to their carts for the shotgun start…and they were off! the developments the Society The daytime weather was perfect, with just a touch of rain at the makes toward a cure for MS. very end. Die hard golfers finished their last hole, most putting for a The “Pillars of Society” recog- birdie or eagle! A well deserved dinner was served. NewsCenter 5’s nizes those who have included the Mike Dowling hosted the evenings’ festivities with great enthusiasm. Society in their estate plans. Auction bidding was lively fun throughout the night. Members automatically receive a Participants left for home calling out, “Can’t wait till next year!” certificate signed by General Mike “what a great event, I want to play with the same pro next year,” “it Dugan, President & CEO, special was terrific!” So when you see it on the schedule in 2005, save the date updates throughout the year, and and be a part of a great event; Link Up for MS. an invitation to attend a special leadership dinner at our annual National Leadership Conference. Mailbox Watch Current Pillars of Society Every fall, the National Multiple Sclerosis Society reaches out through members are listed in the Honor the mail to encourage members and others in the community to make Roll of Philanthropy on a generous contribution to the year-end fund raising campaign. www.nationalmssociety.org, under For many of our friends and supporters, fund raising events such ‘Get Involved’. as the MS Walk, the MS Cycling Series, and the MS Challenge Walk If you’ve named the Society in are not their style. For them, the mail campaign is an annual your estate plans, please contact reminder to set aside a few moments to include the Society in their TJ Cournoyer at 1-800-493-9255, year-end giving. Every dollar really does make a difference in provid- or [email protected], so ing help for today, and hope for tomorrow through MS education, sup- that he can add you to our Honor port, advocacy, and research. Please be as generous as you can. Roll. If not, perhaps you will let Remember, the National MS Society does not conduct telephone us send you a free but valuable marketing campaigns. You might receive a recorded message from us guide, “Creating a Legacy to remind you to check your mailbox for our annual giving letter, but Through Your Will,” about gift no solicitor will call you requesting donations. If you do receive a call and estate planning. Just call TJ asking for a contribution for MS, be sure to ask the caller for complete to request your copy. It is worth information, including their phone number and the name of the group reading whether or not you choose receiving the money. Then check them out before making any giving to make a future gift to the decision. There are a number of reputable charity watchdog organiza- National MS Society. tions that you can contact for information. 10 Toll-Free Number: 1 800 FIGHT MS FUNDRAISING Honorary Chairman of MS Cycling Series Wins Gold in Greece MS Cyclists Send Congratulations An Evening of Distinction The National MS A Celebrtion of Extraordinary Women Society sent personal notes of congratula- Wednesday, November 3, 2004 tions from MS cyclists Marriott Burlington to Tyler Hamilton on Honorees: his recent win at the Summer Olympics in Athens. All well-wish- Mary Lou Andre es were compiled into President & Founder, Organization By Design, Inc. a specially created album and for- warded directly to Tyler, to show Rachel Kaprielian him just how much he means to us! Massachusetts State Representative GO GLOBAL! Sept. 27 - Oct. 4 Wendy Booker Marathoner, Mountaineer, and MS Ambassador Ride the MS Global European adventure Guest Speaker: cycling tour with Tyler Hamilton. Draft in the Ellen Sue Stern tracks of the Tour de France along Author, Coach, and National MS Ambassador side elite cyclsits, while you fight MS! Check out the information Mistress of Ceremonies: online or call the Chapter office. Suzanne Bates CEO, Bates Communications For information, please call Linda Thomson, 781-693-5139

Summit Success! wo years ago, Wendy Booker was MS Bike Tours: bound and determined to reach the Great rides for a good cause! summit of Mt. McKinley. But, she elebrate the success of the T and her team were turned back by 2004 MS Cycling series -- severe weather at 17,000 feet. As she descend- C expected to raise over $1.5 ed, tired and mentally drained from three million -- and mark the 2005 tour weeks on the mountain, Booker vowed to come dates in your calendar today. Don’t back and try again. Six years ago, Wendy miss out on the most fun and best Booker vowed to meet another challenge -- supported rides in New England! multiple sclerosis, and she is doing just that! At 5:40 PM Alaska time on Sunday June Tour the 27, 2004, Booker accomplished her goal. She Vineyard is the first known woman living with relapsing-remitting MS to reach May 14 the summit, adding another chapter to her already awe-inspiring story of hope for others living with MS. This time around, Booker was the only person living with MS on the team. Great Mass “It was two long years waiting to get back there and finish what I Getaway started,” Booker said. “Since my diagnosis, I've tried to live every day June 25-26 to the fullest and do everything I can to keep my MS in the back- ground. For me, pushing myself to achieve goals, to inspire others to have hope, and to educate others about what people living with MS Green can do is what keeps me going. I'm not doing this just for me. I plant- Mountain ed the flag for the entire MS community on the McKinley summit!” Getaway “We summitted just before of Independence Day,” said Booker. “So August (TBA) much of what I hoped to accomplish by climbing this mountain is about independence from this disease. I'm managing my disease with Bike & Hike a daily injection. I know people respond differently to therapy, but I'm the Berkshires able to get out and continue to live my dreams!” September 24 Climbing the tallest mountain in the is not some- thing that everyone can do, but for Wendy the symbolism of the jour- ney translates perfectly to the obstacles that she and other people who Ride the MS Ride! have MS face everyday in real life. 11 Visit our Website at: msnewengland.org