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Walk Because You Can! R of a Small Clinical Trial of T All Depends on You in 2002 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 passingT 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.
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