MSConnection March/April 2002 Vol. 02, Issue 2 Greater Connecticut Chapter
Mixed Results on 2002 Prokarin Patch
Biological Products esults published Walk Because You Can! R of a small clinical trial of t all depends on you in 2002. By taking one step you can help Prokarin, a drug shorten the road to the cure for multiple sclerosis. So shake off given by skin I that winter chill, limber up and join us Sunday, April 21 at the patch, suggest 2002 Bayer MS Walk. that the drug appeared safe. The Make all the right strides at one of the walk’s nine sites throughout the study primarily sought evidence state. The sites include: Cheshire, Clinton, Enfield, Groton, Manchester, that the drug could treat fatigue, West Hartford, West Haven, and Simsbury. If you can’t join us for April and investigated other MS-specific 21, catch up with us at the Woodstock walk on April 28. effects as secondary outcomes. The clinical trial involved 29 individuals with relapsing remitting or progressive MS. The authors of the investigation report a statistically significant difference in fatigue levels in the 21 individuals who completed Prokarin treatment for 12 weeks compared to the 5 individuals completing treatment with a placebo patch. There was no significant difference seen in the any measures of MS disability or in measures of brain chemistry determined by magnetic resonance spectroscopy. Prokarin is a proprietary formula that contains, among other undisclosed components, histamine and caffeine, and was developed by a nurse who has MS. For several Step in the right direction. years, Prokarin (formally called Join us at eight sites throughout the state on Procarin) has been marketed to April 21 for the 2002 Bayer MS Walk. pharmacists to compound (create a preparation using the ingredients) for individual patients. The Chapter’s goal is to have 5,600 walkers striding across the state to raise more than $910,000 to help find the cause and cure for MS. continued on page 7 The five-mile routes that twist and turn throughout the state are the pathways to the cure. Enjoy the shoreline walks in Clinton and Inside This Issue . . . Groton or walk amongst the wooded forests of Woodstock. The routes are accessible allowing participants of varying physical abilities to President’s Message ...... 2 enjoy the day. There are also 2.5 mile walk routes at each site. WAMS ...... 4 Walkers should arrive at the starting locations at 8 a.m. The walk starts promptly at 9 a.m. with ribbon cutting ceremonies at each site MS Research ...... 7 featuring MS Walk Ambassadors and local dignitaries. Support Groups ...... 19 Calendar of Events ...... 20 continued on page 10
The National MS Society . . . One thing people with MS can count on. The MS Society Then and Now I would like to congratulate Things at the Greater organization. I have had the Community Programs Director Connecticut Chapter were also pleasure of getting to know Susan Raimondo, who recently very different. The Chapter many wonderful people through celebrated her 15th year with the served approximately 1,200 the MS Society. I even met my Chapter. In recognition of people with MS each year. Now husband who volunteered for the Susan’s accomplishments and over 3,300 people are registered Society at one of our early MS experiences over the years, I’ve with us and since MS is a Vacation Weeks. It never ceases asked her to write a guest article family disease, we actually serve to amaze me how generous our for this issue of MSConnection chronicling the ‘MS Society Then 12,000. volunteers are with their time and resources. All of them are and Now.’ Technology has made a major dedicated and passionate about – Lisa Gerrol, difference in the distribution of helping the Society end the Chapter President information and timeliness of devastating effects of MS. research updates and scientific breakthroughs. And the I can truly say that the world of Chapter’s message is now one of MS has improved dramatically by hope and how crucial it is for in the past 15 years. I hope that Susan individuals to get diagnosed and the next 15 bring many more Raimondo treated right away. breakthroughs so that we can truly say that the devastating Volunteers have always been effects of MS have ended. I the backbone of our his July will be my 15th anniversary as an employee of the Greater Call to Action TConnecticut Chapter of the National MS Society and I hanks to significant advances in research, the FDA has would like to take this approved several treatments that may alter the underlying opportunity to reflect on how disease course of multiple sclerosis, and early treatment the face of MS and the MS T is critically important. People with MS should consult their Society have changed dramatically over the years. doctors about using one of these FDA-approved medications and The MS Society and MS play a other effective treatments for the symptoms of MS. If you or very vital role in my life. I someone you know has MS, contact the National Multiple became involved with the Sclerosis Society at 1-800-FIGHT MS or nationalmssociety.org Society as a volunteer after my for more information. I mom was diagnosed with MS when I was a teenager. I later joined the Chapter as an employee on July 20, 1987. The mission of the National MS Society is to Over the course of 15 years, our end the devastating effects of multiple sclerosis. knowledge and understanding of (860) 953-0601 • 1-(800) FIGHT MS (344-4867) • Fax (860) 953-0602 MS has grown by leaps and http://www.nationalmssociety.org or bounds. Imagine being told that there is only one MRI in www.ctnmss.org (Local Web Site) Connecticut and no treatments are available for MS. That was Dan Doty, Chairman, Board of Trustees very commonplace in 1987. We Lisa Gerrol, President and Chief Professional Officer also had limited options for Jill Zorn, Chapter Programs Director symptom management. Now we Susan Raimondo, Community Programs Director have drugs like Tizanidine, Gary Griffin, Editor Botox, and the Intrathecal Baclofen Pump. MS was not The Greater Connecticut Chapter of the National Multiple Sclerosis thought to impact cognition or Society is proud to be a source of information about multiple sclerosis. cause pain – both of which we Our comments are based on professional advice, published experience now know can and do happen to and expert opinion, but do not represent therapeutic recommendation people living with MS. or prescription. For specific information, consult a qualified physician. Diagnosis was also difficult, The Greater Connecticut Chapter of the National Multiple Sclerosis often taking years. People were Society does not endorse products, services or manufacturers. Such often misdiagnosed and instead names appear in this publication solely because they are considered told that they had a psychiatric valuable information. The chapter assumes no liability whatsoever for condition. MS frustrated the contents or use of any product or service physicians because there was mentioned. not much that could be done. The publisher reserves the right to refuse For many years, MS was known advertising deemed inappropriate to the as an illness that for physicians philosophy of the National Multiple Sclerosis was “Diagnose and Adios.” Society.
2 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS Oldest National Local Walker Leaves Researcher Large Footprints Honored
he Chapter is deeply r. Timothy saddened to Vollmer, announce the Director of the Tpassing of Bill Hinrichs, D Yale MS Research one of our most dedicated Center and president and visible walkers. Bill Bill Hinrichs of NARCOMS, a Dr. Timothy Vollmer and passed away January 11, consortium of MS General Mike Dugan, 2002 at his home. He was 97 years old. Research Centers in NMSS President Bill was most recognized as the nation’s oldest North America, has been inducted into the walker and oldest team leader. For several years his National MS Society Volunteer Hall of Fame. Dr. team “The Gang” was one of Cheshire’s top teams. Vollmer is chairman of the Clinical Advisory Bill’s familiarity with MS spanned a lifetime. And Committee and serves on the National Council of his commitment and resolve helping to end the Clinical Advisory Chairs, the National MS devastating effects of MS was truly appreciated. Society’s Medical Advisory Board and the The Chapter sends its condolences to his family, Chapter’s Board of Trustees. I many friends and team members. I
Chapter Fund-Raisers Receive Scaling Peaks with MS National Praise ric Simons was in Connecticut in January to he Chapter speak about his mountaineering triumphs is pleased to Ethat include Africa’s Mt. Kilimanjaro and T announce Argentina’s Mt. Aconcagua. that three of our top fund-raisers Simons explained how and one local team his passion for climbing have been and mountaineering recognized on the fueled his desire to not National stage for let the debilitating their contributions effects of his MS stand in the 2001 MS in his way of living out Walk. Chris his dreams. He said Getman who raised climbing, like MS, $24,108 in 2001 requires setting lofty was the nation’s Dan Doty and Peter LaPlaca 14th highest fund- goals and working to raiser. Since 1995 Chris has raised more than achieve those goals. $101,546. In previous years, Chris has been ranked as high as sixth. Dan Doty and Peter LaPlaca, both “Everyone has a members of the Chapter’s board of trustees were mountain to climb, Eric Simons recognized as the 46th and 67th, respectively, top whether it’s summoning fund-raisers nationally. enough energy to get through the morning, maneuver a wheelchair or climb a mountain,” said Team Travelers, one of the Chapter’s top teams for Simons to the more than 100 people that attended many years, proudly became the National MS the program. Society’s #1 National Team in 2001. Under the leadership of Jean Cormier, the team participated Simons continues to raise the bar. In May he will in 20 Chapters around the country with over 1,000 lead an expedition that will include eight people team members raising approximately $120,000. with MS to the summit of Alaska’s Mt. Denali. The expedition is the third of seven he has planned. His We simply can’t say enough about the commitment goal is to climb the highest peaks on all seven and dedication put forth by these individuals and continents. Team Travelers. Congratulations and thank you on behalf of the more than 16,000 state residents Special thanks to Berlex Laboratories, makers of affected by MS. I Betaseron, for their generous educational grant to fund this program. I
Visit Our Website at: www.nationalmssociety.org MS Connection 3 Friday, May 10, 2002
omen have the power to bring about great social change and on May 10 hundreds of women will demonstrate this by joining forces to raise funds for those affected by MS. Join them for an W afternoon of stimulating conversation, awareness and compassion. The luncheon will be held on Friday, May 10, 2002 at the Windsor Marriott. Guests who attend the luncheon are asked to make a minimum donation of $75 in support of the Chapter. The luncheon’s Honorary Chairwoman and Keynote Speaker is author, lecturer and broadcast journalist, Faith Middleton of WNPR’s, The Faith Middleton Show. She will be joined by emcee NBC 30 Health Reporter, Carolyn Pennington and Dr. Patricia Coyle of SUNY Stony Brook, a top MS researcher, who will give a research update. A disease of young adults, MS affects women more than twice as often as men between the ages of 20 and 50. The goal of WAMS is to not only increase support and awareness among women, but to also celebrate women teaming together to make a difference in their communities. If you would like more information on WAMS, contact Development Manager, Mary McClintock at (860) 953-0601 ext. 235 or e-mail [email protected] I
Faith Middleton Carolyn Pennington Dr. Patricia Coyle Keynote Speaker Emcee Researcher WNPR Radio Host NBC 30 Health Reporter SUNY Stony Brook Reservation for 10, Please! Become a table captain. Invite your friends, colleagues or family members to lunch. Table captains are asked to fill a table of 10 at the luncheon. All attendees are asked to make a minimum donation of $75.
Steering Committee Susan Austin, Chairperson Sharon Finn Judy Mazzali Nancy Bernstein Terry Gamer Maria McKeon Diane Biegel Karen Guarnaccia Anita Nesci Sandy Chase Dale Hurwitz Mary O’Connor Kim Davis JoAnne Jones Laurie Shakun Shelley Diamond-Jean Cathy Kolovson Filomena Soyster Sandy Doerr Heidi Luck Lauren Sullivan Debra Feldman Laurianne Manchester Keisha Winston
Tune-in to The Faith Middleton Show (90.5 FM) on Friday, April 12, 2002 from 3-4pm! Faith will talk live with Dr. Patricia Coyle about research on the gender differences in MS.
4 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS MS Sights & Sounds Bike Tour Presented by
Biological Products ore than 200 riders from across New England saddled up for the two-day MS Sights & MSounds Bike Tour in September to raise more than $110,000. Team members push one another The exhilarating 115-mile ride took riders through the to the finish. picturesque central Connecticut countryside and along the scenic Connecticut coastline. Camaraderie among riders was very evident in this year’s tour. All of the riders pedaled for a common cause, and in the wake of the Sept. 11 tragedies, displayed the country’s colors on their bodies and bikes. Riders began the first leg of the bike tour at Madison’s Hammonasset State Park and traveled 55 miles through Essex, Chester and East Haddam. An overnight stay at Sunrise Resort in Moodus provided riders with food, entertainment, and relaxation. The Everyone pedaled second day featured a 60-mile scenic return to for someone. Hammonasset Beach through Devil’s Hopyard State Park and along the coastline of Old Saybrook. The dedication and commitment from all participants made the 6th Annual MS Sights & Sounds Bike Tour a tremendous success! We extend our sincere thanks to all the committee members who organized, planned, and facilitated a great bike tour. I
TOP FUND-RAISERS Name Amount 1. Karen Smith $5,772 2. Rochelle Wheeler $5,287 3. Jim MacFarlane $5,003 Signs of patriotism were 4. Bill Zabel $2,500 everywhere at the tour. 5. Stephan Masotti $2,200 6. Katherine Plumb $2,020 7. Pam Chudzik $1,590 8. Karen Crebase $1,585 9. Bruce Holstein $1,385 10. James Healy $1,325
TEAM AWARDS Award Team Captain Raised Riders Most Money Raised Mail Boxes Etc. Jim MacFarlane $11,260 13 Company Most Money Raised No Limits Karen Smith $ 7,262 8 Family Team Largest Company Team Mail Boxes Etc. Jim MacFarlane $11,260 13 Largest Family Team Team Ward Christian Pedersen $ 3,358 11 Best Rookie Team Just Us Rochelle Wheeler $ 6,485 5 Best Team Average Just Us Rochelle Wheeler $ 6,485 5 Best Team Spirit Team Travelers Jessica Rubbo $ 4,170 5 Team Foxwoods Sandy Hill $ 3,003 12
Visit Our Website at: www.nationalmssociety.org MS Connection 5 MS Sights & Sounds Sponsors
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6 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS R e s e a r c h H i g h l i g h t s Epstein–Barr Your Input’s Important esearchers at Harvard School of Public Health and School of ant to help R Medicine report on a study that the Chapter adds new information to ongoing research in a unique focused on discovering what factors W way? If you are a person trigger MS and how they can be stopped. with MS, you will soon In a paper published in the December 26, 2001 issue of receive a request to the Journal of the American Medical Association participate in a focus Alberto Ascherio, MD, PhD, and colleagues at Harvard group. We need your report on a study of blood samples from a subgroup of input on Chapter women participating in the long-term Nurses’ Health programs and services. Studies, which have followed the health status of What is a focus group? It is a group of 8-10 230,000 registered women nurses since 1976. The people being interviewed by a trained group searched for elevated levels of immune facilitator. We are using these groups to antibodies (indicating prior exposure to an infectious agent) against the Epstein-Barr virus and another learn more about the issues and challenges virus for comparison, searching for a possible you face, so that we can better design association between these viruses and MS. This programs and services to meet your needs. research group had reported previous studies The groups will be held on Friday, May 3 associating exposure to Epstein-Barr virus (EBV) with and Saturday, May 4. Each group will meet MS. Epstein-Barr virus causes infectious for approximately two hours. When you mononucleosis. receive the notification, please consider A small proportion of the thousands of women enrolled volunteering to participate in one of the eventually developed MS. Of those, the authors report groups. Information about the focus groups on 18 whose blood had been drawn before they will also be posted on our Web site developed MS. Based on several measurements, on www.ctnmss.org. I average the 18 women had higher levels in their blood against portions of the Epstein-Barr virus than matched controls of antibodies. The authors also analyzed the blood of 126 cases of MS in which the blood was collected after disease onset, and found significantly higher levels of the antibodies than matched controls but lower levels than those of the women whose blood was collected prior to onset. While EBV has been associated with MS and proposed as a possible MS infectious trigger in the past, this is the first published study in which antibody levels could Mixed Results on be assessed prior to diagnosis. The authors note that over 90% of Americans have been exposed to EBV and Prokarin Patch have residual EBV antibodies in their blood, but the Continued from Page 1 vast majority do NOT have MS. They conclude that EBV may serve to increase the risk of developing MS, This is the first report of a controlled clinical but that other factors must also be involved. trial of Prokarin in MS, a proposed treatment This interesting study adds new information to for MS that has been promoted for several ongoing research focused on discovering what factors years without sufficient evidence for its safety trigger MS and how they can be stopped. Other studies or effectiveness. Several issues with the design have shown associations of MS with Epstein-Barr of this Prokarin study make it difficult to virus and other viral or bacterial infections, but none interpret, including the small sample size; the of the studies yet prove that a specific virus or very different numbers of people in treatment bacterium actually causes multiple sclerosis. and placebo groups; potential confounding I effects of caffeine, a known stimulant; and — Research Programs Department others. Other treatments are available for fatigue and are widely used. Prokarin may have a stimulant quality that has an impact on fatigue, even though the design of the current study makes this difficult to interpret. Individuals concerned about MS and fatigue should consult their physicians about Prokarin and other fatigue treatments.
— Research Programs Department I
Visit Our Website at: www.nationalmssociety.org MS Connection 7 R e s e a r c h H i g h l i g h t s Revised FAA Antibiotic Tested on Rats Guidelines for esearchers report having successfully Injectable treated rats with the MS-like disease EAE Medications R with the antibiotic drug minocycline. In this study, investigators induced EAE in • According to recent FAA regulations, people laboratory rats and then will be allowed to board treated them with an airplane with an injectable medication only minocycline, an antibiotic if they can show a professional pre-printed used to treat acne and pharmacy label that clearly identifies the other infections. The medication. investigators found that • Since the prescription label is usually located when the rats were treated on the outside of the medication kit, the FAA before the disease began, recommends that people pack the medication the treatment significantly supplies in their original box with the printed reduced disease activity. prescription label on it. When the rats were treated • Because of concerns about possible forgeries, a after symptoms had physician’s written prescription or letter will not already begun, the disease be considered an acceptable alternative to the severity was reduced and progression was prescription label. stopped. • Airlines vary significantly in their security While minocycline is most commonly used because procedures. It is very important that people contact the airline directly, prior to the of its ability to fight off bacterial infection, the departure date, to inquire about what else they drug also has wide-ranging immune system- might need to do. suppressing and immune system-regulating • If you run into any problems at the airport functions. In a careful analysis of the animals in relating to these regulations or have any other this study, the investigators conclude that the MS-related problem as a result of airport drug’s beneficial effects on EAE relate to its security measures, you should ask to speak to ability to regulate immune responses and the security screener’s supervisor or contact the inflammation, rather than its ability to fight FAA grounds security commissioner at the bacteria. MS is already known to be treatable by departure airport. an array of medications that help regulate • For more information from the FAA, call 1-866- immune function, although current treatments are 289-9673 or visit www.FAA.com. only modestly effective, and better treatments are Please keep in mind that each of the injectable needed. MS drugs is different. For additional information This is a very interesting study, indicative of the on proper packing and storage to maintain the wide range of substances that are currently being drug’s stability, please refer to the following Web studied in both animals and humans as potential sites or toll-free numbers: treatments for MS. While these results are ® • Betaseron : www.mspathways.com; encouraging, it is important to keep in mind that 1-800-788-1467 this study was done in a rodent model that is • Avonex®: www.msactivesource.com; similar to, but not identical to, human multiple 1-800-456-2255 sclerosis. • Copaxone®: www.sharedsolutions.com; — Research Programs Department I 1-800-887-8100 — Research Programs Department I
8 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS R e s e a r c h H i g h l i g h t s MS UPDATE: Support for Parents Breakfast with S affects young adults Dr. Vollmer and in the prime of life, Workshops on MS Moften when they are raising families. Parenting with chronic illness can be Saturday, March 23 stressful and exhausting, and parents with MS face unique Holiday Inn, North Haven challenges. The Chapter is 8:30 a.m. – 1:30 p.m. pleased to announce a new support group just for parents with MS, to help them get the oin MS researcher Dr. Timothy Vollmer, Director of the Yale support and advice they need. MS Research Center, for breakfast. The world-renowned researcher will provide an update on current research, This new group will offer J support through a monthly clinical trials and progress in advancing the efforts to develop treatments and a cure for MS. toll-free evening telephone call. A professional in the field After breakfast the program features from 10 a.m. to 1:30 p.m. a of parenting will facilitate variety of workshops on issues impacting people with MS. Guest these hour-long conference call speakers will talk about Social Security and Medicare options, on special issues relating to pain and MS, depression and MS, and the benefits of physical group members and offer tips therapy. and advice for effective Don’t miss this wonderful opportunity to learn from the best! parenting. To register for this free program or for more information, Registration is required. contact Lynette Coleman at (860) 953-0601 Ext. 229 or e-mail Please contact Amy Watkins I [email protected]. at (860) 953-0601 or e-mail [email protected]. I Long-Standing Brain Lesions May Inhibit Myelin Repair Reaching for New Frontiers Investigators at the Cleveland Clinic Foundation recently published findings on the cells that make and replace myelin in he National MS Society and around long-standing, or chronic MS brain lesions. The and the MS Society of Iinvestigators found evidence that the brain makes major attempts to T Canada are teaming up repair itself, with myelin-making cells, called oligodendrocytes, to present the North American present in lesion areas. Education Conference, “Reaching for New Frontiers in However, the appearance and condition of the oligodendrocytes MS Research,” on Tuesday, May suggest that the cells are unable to complete the steps needed to move 14, 2002. toward replacing myelin. These cells present a potential target for the development of therapies that can push them into the final steps of The program will cover three myelination to repair the damage caused by MS. critical topics of MS research, including information about The team of investigators evaluated 48 "chronic" MS lesions (long- alternative and complimentary standing patches of myelin damage showing little immune activity, as therapies, with presentations opposed to active, acute lesions showing signs of immune attack) from and panel discussions from autopsied brain specimens of 10 individuals, most of whom had internationally known experts progressive forms of MS in their lifetimes. in their fields of research. The The investigators found an abundance of premyelinating program will also feature a live oligodendrocytes in 34 of 48 chronic lesions examined, regardless of question and answer session. individuals’ age and type of MS. The premyelinating oligodendrocytes The program will be broadcast extended processes toward axons and showed signs of myelin protein live from 7:15 p.m. to 8:45 p.m. production, but failed to begin to wrap myelin around them. Many at Manchester Community chronic lesions showed signs of myelin repair at their borders. This College in Manchester and research presents potential targets for the development of new Gateway Community College in therapies that can push myelin-making cells into the final stages of North Haven on May 14. myelin repair. To register or for more Additional research geared to understanding how oligodendrocytes information on this program, and axons interact normally and in MS lesions should also help contact Programs Coordinator scientist develop effective myelin-repair strategies. These and many Amy Watkins at (860) 953- other research approaches to repairing the damage wrought by MS 0601 Ext. 247 or e-mail are currently underway. [email protected]. I – Research Programs Department I
Visit Our Website at: www.nationalmssociety.org MS Connection 9 Walk Because You Can! . . . Prizes continued from page 1 RAISE WIN At each site volunteers provide participants with first class $10,000 $500 Bob’s Stores Gift Certificate and treatment. Walkers will be Tour of Champions trip to San Diego. refreshed with Crystal Rock $5,000 $500 Bob’s Stores Gift Certificate Water and fresh oranges $2,500 $250 Bob’s Stores Gift Certificate provided by Stop & Shop. The pampering continues at the $1000 $100 Bob’s Stores Gift Certificate finish line. Walkers are treated $750 $75 Bob’s Stores Gift Certificate to SUBWAY sandwiches and beverages provided by Subway $500 Bayer MS WALK embroidered fleece and Coca-Cola. stadium blanket Form a team of four or more! It’s $300 Bayer MS WALK embroidered sweat shirt not too late. Round up fellow $200 Bayer MS WALK long-sleeved T-Shirt employees, friends or relatives. $100 Bayer MS WALK T-Shirt Your participation brings us that much closer to finding the cause and cure for MS. ELITE FUNDRAISING CLUBS SIGN UP TODAY!!! Call Millennium Circle 1-860-953-WALK (Hartford By raising $2,000 or more in 2002, you’ll receive a calling only) or 1-800-233-7617 commemorative watch inscribed with: “It’s time to to register yourself or a team. end the devastating effects of MS.” Committees have been Mission Possible Club organized in each of the nine Raise $10,000 or more and receive public recognition, site areas throughout the state the mission focused award and national recognition. enlisting the help of volunteers to plan and assist with all facets *Walkers must turn in their donations by May 31, 2002. of the Bayer MS Walk. It’s not too late to join a committee, call the Chapter at (860) 953-0601 for information on the times and I locations. Joining Forces In The Fight We are pleased to announce that Chris Dailey, Associate Head Coach of the UCONN Women’s Basketball Team, and Jamelle Elliot, Assistant Coach, continue to support the Walk in Woodstock National MS Society by serving as Honorary Co-Chairs of the walk. We wish them continued success in their 2002 ou want to help more? Then join us Sunday, basketball season. GO LADY HUSKIES! YApril 28 in Connecticut’s For the second year the Chapter is thrilled to have News quiet corner for the Woodstock Channel 8 Anchorman, Darren Kramer, serving as the MS Walk. I Grand Marshal for the 2002 Bayer MS Walk. I
Jamelle Elliot Chris Dailey Darren Kramer st Sunday, April 21 UCONN Women’s Basketball WTNH News Channel 8
10 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS MS Walk Sponsors PRESENTING SPONSOR GOLD SPONSOR Assa Abloy, Inc. SILVER SPONSORS American Honda Biological Products Hartford Hospital Lydall, Inc. PLATINUM SPONSOR The Okonite Company Pepe & Hazard Pfizer PricewaterhouseCoopers, LLP BRONZE SPONSORS DIAMOND SPONSORS Advest-Dan Fine Alliance Energy Berlex-Betaseron Blum, Shapiro & Co., PC CT Rehab/www.ctrehab.com Biogen-Avonex Hospital for Special Care Konica Business Technologies, Inc. Kostin Rufkess & Co., LLC The Marcus Law Firm New Haven Savings Bank Saint Francis Care MEDIA SPONSORS
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ADDITIONAL SUPPORTERS
Visit Our Website at: www.nationalmssociety.org MS Connection 11 C h a p t e r H i g h l i g h t s Innovative Researcher What’s New In niversity of Connecticut’s Dr. Akiko The Raymond P. Nishiyama, a recipient of three National Howell Library? UMultiple Sclerosis Society grants, has an unconventional approach to research. Instead of Books: relying on traditional techniques, she chooses to Multiple try the alternative and explore new ones, which Sclerosis: Current greatly benefits those with multiple sclerosis Status and and other researchers. Strategies for the “I feel that I am dispensable as a research Dr. Akiko Nishiyama Future. Edited by scientist if I only do experiments that anyone Janet E. Joy and Richard B. can do easily by mixing together what is already available,” says Johnston, Jr. and published by Nishiyama. “If there is an important question that cannot be answered National Academy Press, 2001. by the reagents and techniques currently available to us, I like to explore new methods and directions of research.” 438 pages. She does admit that generating results with new methods often takes From the Heart of a longer, but her investigations have great potential to generate tools Caregiver: A Spiritual and knowledge that benefit many other scientists. Journey. Written by Susan In her current investigation of the role ‘glial progenitor cells’ have in Sybil Bria and published by remyelination, Nishiyama hopes to obtain an unbiased understanding Weidner Publishing Group, of the potential and characteristics of these cells, so someone with 2000. 180 pages. practical interest can apply the information to develop therapeutic strategies for MS. The NMSS awarded the researcher $263,530 in Living With Low Vision. A September of 1998 for the four year investigation. resource guide for people with The investigation involves the exploration of immature brain cells sight loss. Published by (NG2 cells) that may be capable of maturing into cells that make Resources for Rehabilitation, nerve-insulating myelin, and their role in myelin repair in MS. Inc., 2001. Large print, 303 To do this, Nishiyama says she needs to discover whether cells exist pages. that can generate remyelinating cells in the normal adult central nervous system and if so, where they are. Then she must find out Multiple Sclerosis: A Guide what causes them to increase in number (proliferate) and develop into for Rehabilitation and (differentiate into) mature remyelinating oligodendrocytes. Health Care Professionals. “Proliferation has been a little easier to study than differentiation Edited by Philip D. Rumrill, Jr. because there is a relatively easy method to identify proliferating cells and Mary L. Hennessey. in experimental animals,” says Nishiyama. “It has not been so easy to Published by Charles C. Thomas, study differentiation using currently available methods.” 2001. 215 pages. By employing her innovative techniques Nishiyama has developed a genetic approach that involves turning on a permanent cell-tracing To borrow these materials marker in NG2 cells at a desired time. Using this marker, that or for a complete list of continues to be expressed by cells regardless of what cell type they library resources, contact differentiate into, she can study when and where NG2 cells give rise to the Chapter at (860) 953-0601 remyelinating oligodendrocytes in demyelinated mouse spinal cord or visit our web site at and brain. www.ctnmss.org. I Nishiyama says all the pieces of DNA have been put together into mouse embryonic stem cells and she is now waiting for the mice to pass the gene to their offspring. And once that is achieved, which she anticipates later in the year, she will be able to start studying how Aquatic Programs NG2 glial progenitor cells differentiate in demyelinated lesions. Champions Health Club, Cromwell. Mondays and Fridays She believes the solution to the MS puzzle requires two approaches: 10:45 a.m. Call Lynn at (860) stopping whatever causes demyelination and promoting repair. Her 267-7012. research, if successful, is crucial to promoting repair and we are assured she won’t stop there. Gaylord Hospital, Wallingford. Monday-Saturday during posted “My goal is to teach my students, and to learn myself, how to be a good hours. Call pool office (203) 284- student of nature and to heed what nature is telling us through our 2800 x3438. experiments by doing the right kinds of experiments and keeping our eyes and minds open to all possibilities.” she says. Hospital for Special Care, Support for these types of investigations is part of the Society’s $30 community and group memberships available. Call million annual investment in MS research programs, and its $37 I million multi-year funding commitment to some 300 MS-related 1-877-HSC-POOL. research projects at major universities and medical centers throughout the United States and abroad. I
12 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS C h a p t e r N e w s Volunteers Raise the Bar or Dave and Mischa Campbell it started with an invitation to ride in a bike tour, and shortly thereafter they were F hooked. Now more than 20 years have passed and the simple handshake or thank you from those they are helping is not lost on this husband and wife team; it only further reinforces their commitment and desire to do more. And doing more as volunteers is an understatement. Since their first bike tour in 1983 the Campbells have become more involved with the Chapter. This year marks their 14th year as members of the West Haven walk committee and they have been involved with the MS Sights & Sounds Bike Tour since its inception six years ago. The Campbells are very experienced volunteers and their dynamic working relationship greatly benefits events, participants and Dave & Mischa Campbell other volunteers. They compliment one another nicely. Dave stays in the background and using his practical and organizational skills ensures event day runs smoothly. Every year Dave escorts the last rider of the bike tour to the finish line, a promise he made from the beginning. Mischa stays in the foreground supervising volunteers, fielding questions and managing registration. “Our goal is to continue to raise the limit on event development and fundraising,” said Mischa. “We try to present a positive image to the public, clients, volunteers, and participants and show them that volunteering comes in all forms, and holds a different value for all of us.” The Campbells are able to overcome the many obstacles that may occur when organizing events. When there’s a need for volunteers the Campbells increase their recruiting efforts in the community. Mischa has been successful in getting students from the University of New Haven to commit yearly to the MS Walk. Whatever the scenario, with the Campbell’s commitment to excellence one can ensure a strong team of volunteers and a near flawless event. On a personal level the Campbells are satisfied when they hear of someone making great progress with a new MS therapy or when they witness the clapping, tears and shared sense of accomplishment from everyone trying to make a difference in the lives of those with MS. “Volunteering is a high that nothing can duplicate,” says Dave. “It’s what one makes of it and it also makes you thankful that you took the time to share a part of your life with someone else.” To volunteer contact the Chapter at (860) 953-0601. I
Visit Our Website at: www.nationalmssociety.org MS Connection 13 Pillars of Society There has never been a more promising time to intensify the attack on MS
illars of Society is the National MS Society’s honor society that recognizes Pindividuals and families who have remembered the Society through a bequest, gift annuity or other deferred gift. We value the members of Pillars for their deep and genuine commitment to improve the lives of people with multiple sclerosis. By joining the Pillars of Society you will enjoy many rewards. Besides the personal joy of knowing you have contributed to the well being of others, you will receive acknowledgement for joining Pillars. As a member you will be recognized in National MS Society publications, with your permission. In addition, you will be invited to local educational programs and activities. If you have already included the National MS Society in your estate plans, or have made another deferred gift, you can become a member by simply completing the Pillars of Society membership form. For additional information about a bequest or other planned gifts, please contact, Mary McClintock, Development Manager, (860) 953-0601 Ext. 235 or e-mail [email protected]. I
Alliance Energy Corp.’s Donation, The Largest Volunteer Fundraising Campaign
lliance Energy Corp with a regional office in Branford, Connecticut, raised nearly $195,000 for the Greater Connecticut Chapter from their Holiday Party. The donation A represents the largest volunteer driven event contribution ever received by the Chapter. Alliance Energy Corp. is a large retail gasoline distributor in CT, NY, RI and MA. Company Vice President, John Gargano, believed the company’s holiday party could be an avenue to help the community and the more than 12,000 people in the Greater Connecticut area who are affected by MS. According to Mr. Gargano, “The holiday season is a great time to relax and have fun with the people at work. But I have always felt that the holiday season should mean more than just parties, that’s why we tie in a donation to the MS Society with our get together.” Funds received by the Chapter support research to find the cause, new treatments and a cure for the disease. Funds also support local programs such as counseling and support groups, medical equipment assistance, and respite programs. Alliance Energy also is a bronze level sponsor of the MS WALK. I
14 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS C h a p t e r S e r v i c e s Short-term Equipment Loans
as this happened to you? Your scooter’s in the shop and won’t be ready for several weeks, or your doctor suggests that you use a wheelchair for the Hnext couple of months. You may think you have a dilemma, but not to worry, help is just a phone call away. The National MS Society, Greater Connecticut Chapter’s equipment loan closet provides people with MS and their families with devices that can be used to maximize their health and independence. The Chapter maintains the equipment loan closet in order to provide short-term loans of durable medical equipment to clients in the community unable to obtain the equipment through insurance coverage or other community resources. All medical equipment, wheelchairs, lifts, electric scooters, walkers, hospital beds, and bathroom aids are loaned for up to three months with the option of renewal. To qualify for a short-term loan you must have MS, be a registered member of the Chapter and possess, if applicable, a prescription for the equipment. For long-term loans the client must have investigated insurance options and other resources. For more information about the equipment loan closet call Amy at (860) 953-0601 Ext. 247. I Financial Assistance he Financial Assistance Program helps clients pay for items or services to enhance their quality of life and to achieve their T highest level of independence. It is much more than a program to fund the purchase of air conditioners, wheelchairs, ramps or other equipment, although it certainly does these things. Here are examples of how this program has helped people in our Chapter recently: – Contributed to the purchase of a life line personal emergency notification device. – Helped someone with the cost of renting a U-Haul truck so that she can move into accessible housing. – Contributed to the cost of respite care for a client. – Contributed toward the purchase of a voice-activated telephone for a client who is in a nursing home, so that she can more easily communicate with her family. To qualify, clients must have income at or below the State’s Median Income Guidelines. Many of our clients fit into these guidelines: For a family of 2, the income limit is $51,344. For a family of 4, the income limit is $75,534. A simple application must be completed and some supporting documentation is also required. Assets and expenses are also considered. Applications are reviewed by the Financial Assistance Committee, although expedited review is available for urgent situations. The limit for assistance is $500 per year. For items or services that exceed that cost, many of our clients have been creative in seeking funding from several different sources in addition to ours. For more information about the financial assistance program, please contact the Chapter Programs Department. I
Visit Our Website at: www.nationalmssociety.org MS Connection 15 C h a p t e r N e w s Have You Considered A Planned Gift To Information is a The National MS Society? Mouse Click Away our times a here are many ways to give to the National MS Society to year the help us continue our important work of ending the National devastating effects of MS. Here are some of the ways: MSF Society hosts T informative Bequest in Your Will: broadcasts over the Internet. The Everyone can make a bequest and leave a meaningful gift to the 60-minute programs are on various National MS Society. You may avoid estate taxes by giving to a topics for people affected by MS. not-for-profit organization. The programs will start with a 30- minute live audio presentation, Charitable Gift Annuity: followed by an interactive question Receive lifetime payments when you give a gift of $10,000 and answer segment. Using e-mail, or more. people can send questions to the presenter. Later this year the Society will open chat rooms on Charitable Trusts: the site. We accept a wide variety of trust arrangements that your Directions on how to participate advisor can incorporate into your estate and tax plans. in the broadcasts are available at www.nationalmssociety.org, the Gifts of Stock & Real Estate: Web site of the National MS We can help you arrange a gift of stock or other appreciated Society. Programs will be broadcast through the Microsoft Windows property so that you can maximize your tax savings. You may Media Player, a standard feature give a remainder interest in your home to the Society and still on all computers with Windows. live in it for the rest of your life. Tech support is available. Those tuning in to MS Learn-On- Gifts of Life Insurance: Line say that they have new Give an existing policy, or name the Society as beneficiary. knowledge and confidence about their MS. Over 80 percent of people surveyed feel more Retirement Gifts: confident and more in control of Remember the Society in your retirement plan and realize tax how they respond to MS in their benefits by naming the Society as an irrevocable beneficiary or lives. assigning your pension benefits. UPCOMING PROGRAM: Thursday, March 21, 8:30 p.m. Myelin Repair: Is It Possible? To obtain more information about any of the gift types above, please contact Mary McClintock, Development Manager at (860) ***WEB NEWS*** 953-0601 x235 or e-mail [email protected]. I MS Learn-on-Line programs are archived. More than 20 previous programs can be accessed on the National MS Society Web site. I
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16 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS KNOWLEDGE IS POWER An at-home educational program about MS ou are invited to participate in Knowledge is Power, an at-home educational program about multiple sclerosis for people who are newly diagnosed, or for family Y members and friends interested in exploring the issues that challenge many people with MS. Once you register for this free program, you will receive a new article every week. The articles, written by experts who serve as consultants and advisors to the National MS Society, are designed to provide a convenient way to learn more about MS. Knowledge is Power is available in English or Spanish. Topics include: • What is Multiple Sclerosis? • Dealing with your Diagnosis • Working with your Doctor • Treatments in MS • Disclosing your Diagnosis • Disease Modifying Treatments In addition, four specialized articles will be made available if they are of interest to you. Information on these will be included with the sixth article. To register, complete the form below and return it to the Chapter office. Knowledge Is Power — Registration Form NAME: ______ADDRESS: ______CITY/STATE/ZIP: ______HOME PHONE: ______E-MAIL: ______PLEASE CHECK ONE: English I Spanish I DATE OF BIRTH: ______DATE OF DIAGNOSIS: ______Mail to: National Multiple Sclerosis Society, Greater Connecticut Chapter 705 North Mountain Road, Suite G102 • Newington, CT 06111 or fax to: (860) 953-0602
I wish to subscribe to “Keep S’myelin,” the quarterly newsletter for children with parents or other ❏ relatives with multiple sclerosis. Signing this subscription form indicates that permission has been granted for the child to receive this publication.
Child’s Name ______Child’s Address ______Date of Birth for Child/Subscriber ______Name of Parent/Guardian ______Phone Number of Parent/Guardian ______Signature of Consenting Adult ______Relation to Child ______
Please return to: National Multiple Sclerosis Society, Greater Connecticut Chapter 705 North Mountain Road, Suite G102, Newington, CT 06111-1411 or Fax to (860) 953-0602
Visit Our Website at: www.nationalmssociety.org MS Connection 17 Donate Unwanted Support Group Wish List: Vehicles to Help Leaders Needed • Full size refrigerator (in good o you wish there was a Fight MS working order; appropriate for support group that met in an office kitchen) your town? Maybe it is aving difficulty getting • Color desk jet printer for an Dtime to start one! The Chapter is rid of an unwanted IBM computer looking for people with MS who Hvehicle? Tired of placing • Photographers for events are interested in serving as Self- classified ads? Worried about • Lightweight wheelchairs Help Group Facilitators. We are the vehicle’s attractiveness to Please contact the Chapter at looking for people with good verbal car hunters? Well now you can (860) 953-0601 if you wish to communication and organizational donate vehicles to the National donate any of these items. I skills who have the ability to Multiple Sclerosis Society for a empathize, and the desire to help benefit that’s two-fold. Your others in similar circumstances. As donation not only helps to end a Self-Help Group Facilitator, you’ll Classifieds work collaboratively with Chapter the devastating effects of staff. We will provide information multiple sclerosis, but you can For Sale: Mini Jazzy power and training to guide you. You will take an income tax deduction wheelchair, excellent also receive monthly mailings from based on the blue book value of condition. Asking $4,000. Call the Programs Department with the vehicle. If you have a vehicle Peggy (203) 888-2952. information on MS and on you would like to donate to help For Sale: Invacare ranger upcoming programs. Anyone end the devastating effects of electric wheelchair less than interested in performing this MS, call the National Multiple 1 year old, asking $3,000. Call valuable volunteer service, is asked Sclerosis, Greater Connecticut to contact Amy Watkins at (860) Phil Licht at (860) 346-3668. Chapter at (860) 953-0601 to 953-0601 ext. 247. I arrange for a pick-up. For Sale: Rascal three wheel Remember, we do not reject mini scooter with swivel seat, vehicles based on their moveable arm rest and new Friendly Visitors appearance or condition. batteries, asking $600. Call A Volunteer Visiting Whether it’s rust, broken Nancy at (860) 643-5137. Program to Assist windows or blown engines, all For Sale: Quickie Electric Elderly and Disabled Persons vehicles are welcome additions Wheelchair with charger, Friendly Visitors: to the Chapter. I excellent condition, asking • Are trained and screened volunteers who visit one to two $1750. Call (860) 229-1920. hours a week. For Sale: Rascal Power • Help homebound persons Chair, deluxe model; like new, remain self-reliant and asking $2,500. Call Anna at independent. (203) 225-5939. • Assist with tasks that have become difficult such as For Sale: Bruno Cub Scooter, reading, outings, walking and excellent condition, asking $1,600. writing letters. Call June (860) 763-1727. I • Are critical links between isolated adults and the community at large. • Are neighbors helping neighbors. For more information, contact Attention Amy Watkins at (860) 953-0601 ext. 247. I Volunteers: We Need Your Help . . . to assist with the Local Organizations Contribute to the distribution of literature to libraries, hospitals and Mission physicians’ offices. I he Greater Connecticut Chapter would like to extend a special thanks to the following organizations, businesses and clubs for Home Sweet Home T hosting fund-raisers to benefit the MS Society. Your time and HEALTHCARE energy is greatly appreciated. Alliance Energy Corp.: Raised over $194,000 from their holiday party. Wheelchairs – Manual, Motorized, & Lightweight
Melissa Wright of Massachusetts: Donated $270 she raised by Bathroom Aids Home Healthcare because we care Stairway & Wheelchair Lifts 1-800-4-PELTONS running in the Hartford Marathon. 1-800-473-5866 Hospital Beds • Walkers Tyler Clemens of Newington: In lieu of gifts for his 8th birthday, FREE IN-HOME EVALUATIONS Hours: Mon-Fri, 8:30-6; Sat 9-5 DELIVERY AVAILABLE 100 Main St., Middletown • 346-3336 Tyler requested donations be made to the Greater Connecticut 657 Silas Deane Hwy, Wethersfield • 529-6305 Chapter. I We bill Medicare and most other insurances 112 Main St., East Hartford • 568-3710
18 March/April 2002 Toll-Free Number: 1-800-FIGHT-MS BLOOMFIELD GRANBY NEWINGTON VERNON Support 4th Thursday 10:30 am 2nd & 4th Monday 2nd & 4th Thursday 1st Friday 7:00 pm Bloomfield Senior Center 1:00 pm 7:00 pm Vernon Police Groups Lenny (860) 242-8354 Salmon Brook Newington Senior and Department, Nancy (860) 688-4584 Apartments Disabled Center Community Room Please contact Jane (860) 653-2436 Charlie (860) 667-1314 Rhona (860) 644-0038 COLCHESTER leaders for HARTFORD Maria (860) 521-1461 Nancy C. (860) 742-5155 2nd Saturday, Nancy N. (860) 871-6634 information and Call for time and 10:30 am - 12 pm OLD SAYBROOK remember that dates location Westchester 3rd Wednesday 10:30 am WATERBURY Victor (860) 246-4519 and times may Congregational Church St. Paul Church 3rd Tuesday 4:00 pm Ben (860) 675-5257 change from month Ed (860) 267-4096 Bruce (860) 767-2039 First Congregational to month. Peggie (860) 267-9759 MANCHESTER Church of Waterbury PORTLAND 1st Monday 10 am Ray (203) 755-0221 COLCHESTER Portland Library The names and Church of Christ Jean (860) 342-5557 WATERBURY numbers listed are 3rd Wednesday, 6 pm 394 Lydall Street Call Chapter for Info 1st Friday 7:00 pm Colchester Town Hall Nancy (860) 643-5137 not to be used for any Senior Center at SS Peggie (860) 267-9759 Donna (860) 646-6335 PUTNAM solicitation or Peter and Paul Roman Ed (860) 267-4096 rd promotional purpose. 3 Friday 7 pm Catholic Church MILFORD Day Kimball Hospital DERBY nd th Ray (203) 755-0221 2 & 4 Saturday Peggy (860) 974-8770 For other support Alternate Friday evenings 1:30 pm WEST HAVEN group information 6:30 pm Milford Hospital ROCKY HILL Thursdays 12 pm contact the Chapter Griffin Hospital Joy (203) 378-0936 3rd Thursday 1-3 pm VA Hospital, Bldg. 2 office. Casey (203) 881-1644 Andrea (203) 735-0520 Cora Beldon Library 2nd Floor FARMINGTON Lois (203) 878-6222 Carin (860) 379-6745 Mary Lou (203) 932-5711 Maureen (860) 537-2145 1st Tuesday, 7 pm NEW LONDON ext. 2276 OTHER SUPPORT Northwest Village School 4th Wednesday, 6:30 pm SIMSBURY * * * * * * * * * * Wheeler Clinic Lawrence and Memorial Infoline 3rd Friday 11 am-1 pm Anita (860) 674-0451 Hospital, Baker *Groups may change Simsbury Senior Center 24 hour counseling Auditorium dates from month to GLASTONBURY Heather (860) 242-3784 Dial “211” Carol Vara (860) 442- month, please call Peter (860) 651-5481 leaders before 3rd Monday, 7 pm 0711 ext. 2483 Samaritans First Church of Christ attending a group. SOUTHINGTON Congregational 24 hour support nd Sharon (860) 647-0429 2 Monday, 7:00 pm (860) 232-2121 David (860) 633-8533 Bradley Memorial Hospital Christine (860) 721-6400 Carleen (860) 378-0268
Support Group News Newly Diagnosed Groups Many newly diagnosed individuals express the he Chapter is offering the following new desire to meet and talk with others in similar support groups for special audiences: situations. A diagnosis of MS raises many new T issues and surfaces complex emotions. Find Caregiver Telephone Support Group comfort and support with others facing the same Join a group of other caregivers to discuss how to challenges, and learn how others succeed. Call the deal with stress and how to balance your needs Chapter for information. and those of your family members. The group meets via telephone once a month on a Tuesday Young Professionals Group evening for one hour, and is facilitated by a Are you between the ages of 20 to 35 and looking professional. Call Amy to register. for other young working people with MS? The Parenting Support Group Chapter would like to connect you with your peers for support and networking. Call the Chapter if MS affects young adults in the prime of life, often you are interested in a group for young when they are raising families. The Chapter professionals with MS. would like to start a telephone support group led by a professional to help parents with MS get the To find out more about these or other groups support and advice they need. Call the Chapter if in your area, or to find out how to start your you would like to become involved in a group for own group, call Amy at the Chapter at (860) parents. 953-0601 ext. 247. I
Visit Our Website at: www.nationalmssociety.org MS Connection 19 Non-Profit Org. U.S. Postage PAID Hartford, CT Permit No. 01870 National Multiple Sclerosis Society Greater Connecticut Chapter 705 North Mountain Road, Suite G-102
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