GATEWAY AREA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | VOLUME 6 • EDITION 2
UPS & DOWNS OF MS RESEARCH WORK CAN BE FULFILLING, FRUSTRATING BY ANNE H. CROSS, M.D., PROFESSOR OF NEUROLOGY
Doing MS research has been a very fulfilling but also at times frustrating process. I consider my 25-year career a quest for an elusive holy grail that is “the cause and cure of MS.” I decided to study MS because there was no effective treatment at the time and no understanding of its cause. Since MS is so common I thought my work would be needed.
DidYouKnow? That the National MS Society will devote $33.5 million to support 345 new and ongoing research projects this year.
While doing my second and third fellowships I became interested in the process of how immune system cells cross the blood brain barrier and eventually enter into the central nervous system (CNS) in MS. The CNS is a part of the body where, under normal circumstances, immune cells do not go in large numbers. That led me to work on adhesion molecules and adhesion-related mechanisms that were just being defined and identified in the mid to late 1980s. I was fortunate to be involved in some of the very early research in this area related to MS. Some of the research I was involved in, and that of many other investigators, eventually culminated in the development of the drug we now call Tysabri. From the time of our original ideas and the ideas of several other research groups, to the advent of Tysabri took more than 15 years. So advancements in MS research take a long time. CONTINUED ON PAGE 2
INSIDE THIS ISSUE
Worthy Investments PAGE 3
Achievement Is Possible PAGE 11
Express Yourself Through Touch of Nature Writing PAGE 18 PAGE 20
FROM PAGE 1
The development of drugs in the pipeline for MS that inhibit the functions of B-lymphocytes (which can sometimes attack myelin) is well underway, but it took years of work by many different groups of investigators and lots of research dollars to arrive at this point. Being involved in MS research and seeing new drugs that have a real impact on those living with MS come to market is certainly exciting. But the frustration of medical research can enter the scene. After some months and years of writing grants for funding to study the role of B cells in MS, being turned down on several occasions, and trying to persuade the company that made the drug to provide it to us free for use in a clinical trial in MS, we eventually were able to put together a small trial of the drug in 30 people with MS. But that was after many disappointing attempts to get funding and to get the drug for the trial. The National MS Society eventually funded the trial. “Progress will happen, but whether it is sooner or later will be dependent on funding and the ability to recruit the finest intellects to our field and keep them working in it.” – Dr. Anne Cross Then, the company that marketed the drug became very interested and did its own trial with a group that did not receive the drug called a placebo group (our study did not involve placebo, but instead used MRI outcomes as the primary endpoint). The placebo-controlled trial was highly positive and published in January 2008 in the New England Journal of Medicine. The results from that trial and ours (also highly positive) have been factors in driving the ongoing development of other therapeutic agents aimed at B cells and B cell-related factors. The whole process from the initial interest in B cells and their products took almost 12 years. In early 2009, we finished the Society-funded investigator-initiated clinical trial of the 30 subjects with MS at Washington University in St. Louis and are currently analyzing the data from the study. For me, the long years of work and the multiple rejections for 2 |
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funding, which still continue to this date, have been worth it. But I worry that future researchers may get discouraged about obtaining funding in a timely manner for their research for MS. Many of these investigators represent the future of our field and the eventual ability to reverse central nervous system damage. It can be especially demoralizing to young researchers early in their careers to have their ideas rejected for funding. Rejections can often dampen enthusiasm and excitement for an idea, and I’ve seen more than one young researcher give up. Progress will happen, but whether it is sooner or later will be dependent on funding and the ability to recruit the finest intellects to our field and keep them working in it. To get to the bottom of this terrible disease will require many more dollars spent on research. Funding not only from the federal government, but also from the private sector, is necessary in order to do the research we need to create a world free of MS. The Society has been a huge player in the MS research story. However, we have reached a crisis. Due to lack of money, many good ideas and projects that ought to be funded will not be. The economic woes of the world are taking a big toll on MS research. I have served on the Research Programs Advisory Committee (RPAC) of the NMSS for the past two years. Although the peer review committees only recommend a portion of the grants they review for funding, for the first time ever, the Society could not fund all of the recommended grants this year. Not even half of the projects that were recommended could be funded. The committee recommended halting receipt of any new research applications in order to be able to cover the research that was already begun in prior years. By early 2010, I fervently hope that the Society will have recovered enough to fund new research grants, but it is highly likely that a much smaller percentage of projects recommended by the review committees will be able to be funded. Therefore, it is very important that those who care about MS research to donate specifically to this cause, and give what they can to help support the good ideas that are presently languishing without a funding source.
WORTHY INVESTMENTS MS SOCIETY HAS FOCUS APPROACH TO RESEARCH To pursue its mission of creating a world free of MS, the National MS Society makes research a top priority. The Society opens new possibilities for prevention, treatment, and cure through the nearly $50 million invested each year in MS research. Such efforts increase the speed of research, provide for more collaboration between research experts, and allow more rapid creation of new ideas to move toward a world free of MS. Any sincere request for research or training support will be considered by the Society as long as such activity is demonstrably relevant to the Societyâ€™s mission of investigating and combating MS. More than 440 research grants and training fellowships are supported by the Society for immune aspects, nerve tissue repair, myelin biology, clinical trials, rehabilitation, psychosocial issues and health care delivery.
The campaign aims to raise $30 million to advance four key goals. Promise: 2010 will push for improvements in protecting and repairing brain tissue to restore its ability to function. Young people with MS will be given more attention, with critical data gathered to aid researchers in understanding the development of MS from its onset and six Pediatric MS Centers of Excellence setting the highest standard for pediatric MS care. Another goal of the campaign is to track the long-term impacts of MS to allow improvements in the daily life of those living with the disease through the Sonya Slifka MS Longitudinal Study. Finally, patterns of MS damage to the nervous system will be studied through organized collaboration to allow improved treatment. Fast Forward, another targeted initiative of the Society, entails industry-based pursuit of new drug development to increase the number of drugs available for MS study, put drugs through clinical trials faster, and to study existing drugsâ€™ possible benefits to people with MS.
Establishing collaborative MS research centers is another effort of the Society; such centers combine MS research In addition, targeted initiatives of specialists with the fresh perspectives organized research goal sets are of those in other fields in large-scale pursued, including the launch in 2004 of research operations to search for new the Promise: 2010 campaign.
answers to MS. Some studies even focus specifically on progressive forms of MS. In addition, high-risk pilot research grants are uniquely tailored to fund short-term investigations on new and untested ideas to quickly determine if such new ideas merit pursuit. Consequently, each worthwhile idea is explored for as long as the idea is promising, leaving no possible avenue untouched. Such customized research strategies allow the Society to branch out with a variety of strategies without wasting time or money. The Society supports studies of terms ranging from one to five years in length. An annual progress report is submitted for each study before each anniversary date during its term, and continued support payment by the MS Society depends on the approval of this progress report. The Society invests heavily in research as a way to create a world free of MS. New projects are constantly being examined and initiated, while the process of such support is kept organized to leave no room for error in the search for solutions.
For the latest research developments visit nationalMSsociety.org/ Research and click on Research News.
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to walking difficulties.”
PHYSICAL THERAPIST EXAMINES WALKING IN MS IN UNIQUE TRIAL
The study involves just two visits. The first one lasts about 90 minutes and includes a clinical evaluation of neurological function and walking ability. The second visit lasts about four hours and is a laboratory-based assessment of neurological function and walking ability.
When you think of clinical trials and MS research, images of scientists in white lab coats with test tubes and microscopes come to mind as they search for causes and drug treatments for the disease.
Brian Phillips has been living with MS for 11 years and participated in the study.
But there’s another type of study being conducted in hopes of improving the lives of those living with MS. It doesn’t involve any needles or a plethora of MRI tests or infusions. The goal isn’t to find a miracle drug or treatment. Its goal is to help keep people moving with MS.
“It’s fascinating in terms of what Dr. Wagner is studying,” Brian said. “She wants to have a focused approach on why people with MS have trouble walking and other balance issues involved with MS. She really has her stuff together. I think it’s going to be pretty provocative.”
Joanne Wagner, PT, PhD of the Program in Physical Therapy at Saint Louis University is conducting a study which goal is stated as “to identify the factors that result in walking difficulties in adults with multiple sclerosis.” While many people with MS may have experience with physical therapy, seeing it in a clinical study is quite unique.
Sara Breitbarth, who has had MS for more than 20 years and has participated in other clinical trials, was also intrigued by this trial.
“To the St. Louis community it’s some novel stuff because they’re not used to having their motor performance evaluated in such detail,” Wagner said. “When we say we’re trying to understand why they’re having walking difficulty, they’re very interested. They want to know more about how they walk and helping other people. We’re doing a study where we’re trying to better understand the factors that contribute 4
“I’ve had to give up many things with MS with my fine motor skills like putting in earrings, buttoning shirts and I’ve always loved dancing,” Sara said. “If there’s any way through physical therapy that I can retrain my muscles that would be wonderful.” Brian and Sara were both impressed by the technology involved in studying their movements as machines and other attachments were focused on them. “It was very intriguing and the whole day I was asking questions about the different machines,” Sara said. “It was so high-tech.”
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Chris, diagnosed in 1993
Brian Phillips, a dedicated participant in Challenge Walk MS, recently took part in a research project that studies how people with MS walk. “There were a lot of sensors and wires on me that did an analysis of my walking,” Brian said. “It was very detailed and I think a lot of good can come out of it. The studies weren’t just go out and do this. But they studied specific movements and strength of my legs. It seems like a very logical approach.” Wagner has studied about 15 people since April and is recruiting a total of 80. So far she’s enjoyed working with people living with MS. “It’s been great. People have been very cooperative and very interested,” she said. “I’ve gotten a lot of good, positive feedback. They end up spending six hours with members of my lab and me. They get these opportunities to really evaluate their balance and talk to us afterwards about what we saw. It’s been really positive.” For more information or to volunteer contact Joanne Wagner at 314-9778532 or email@example.com.
DETECTING NERVOUS SYSTEM PROTECTION & REPAIR Imagine this: a new therapy works to protect brain cells from the damage caused by MS and possibly even repairs them. But there’s no way to tell when it is actually working. Nearly 60 scientists discussed the problem at a workshop held last summer in Amsterdam by the National MS Society’s International Advisory Committee on Clinical Trials. Findings were published in Nature Reviews Neurology 5, 256266, and is available free at nature.com/nrneurol/ journal/v5/n5/pdf/nrneurol.2009.41.pdf. The scientists assessed emerging and current imaging technologies, rating qualities such as how well results corresponded to clinical symptoms. Three technologies stood out: • Optical coherence tomography (OCT) uses infrared light to measure the thickness of the nerve fiber layer of the retina at the back of the eye.
If you’re like a lot of people, a few dollars each month might never be missed ... but for individuals living with MS, those few dollars can mean everything. We would like to ask you to participate in our Gateway Giving Circle by giving as little as $10, $25, $50, $100 or $150 per month... an amount that would be conveniently charged to your credit card. For more go to www.gatewaymsgivingcircle.org
• Magnetic transfer ratio (MTR) measures how much energy is transferred or absorbed by protons in the brain. • Whole brain volume measurement, which is done with a series of MRIs, has excellent sensitivity to disease changes, researchers noted, but does not distinguish well between types of tissue damage. The researchers concluded that a combination of these technologies appears to be best to determine if a new therapy is working to protect brain cells. But they also agreed that it is much harder to detect whether a therapy is working to repair brain cells. You may hear about fMRI, an imaging technology that measures the amount of oxygen used by different areas of the brain, as a way to detect repair as scientists conduct more studies.
BREASTFEEDING & MS Breastfeeding may benefit women with MS, a recent study suggests. In the study, only 36% of women with MS who breastfed exclusively for at least two months after birth experienced an exacerbation, as compared to 87% who did not breastfeed or who supplemented with formula. While the study was small, the results question the benefit of foregoing breastfeeding in order to resume MS treatment after birth. The study was published online in the Archives of Neurology in June 2009. Not breastfeeding reactivates the ovaries, said lead researcher Dr. Annette Langer-Gould, a process that may be the reason MS exacerbations typically increase after birth. The researchers will be conducting a larger study to confirm the findings and possibly identify the immunosuppressive factor in breastfeeding. TOLL FREE NUMBER 1 800 344 4867
THROUGH THE EYES
OFFICE VOLUNTEER, SPEAKERS BUREAU VOLUNTEER, CHALLENGE WALK MS PARTICIPANT
phone call from Bobbie Appelbaum of the MS Society. I knew then that was where I needed to go. I worked with Bobbie many years ago and we got along really well. She asked me if I would like to do some volunteer work for them, do an ambassadorship and go to different seminars as a representative for the Chapter. That sounded great since I love to meet new people, especially ones who I admire so much.
I was sitting one evening with my wife Debbie watching TV just relaxing, when she said I need to get off my butt and do something worthwhile. You see, I was lucky enough to get full disability from the state plus receive my full pension from Local 655. Unfortunately for my wife she must continue to work. That doesn’t go over very well sometimes, considering she has a very stressful job.
The people at the Chapter and the people who live with MS have shown great determination and a great joy for life. They are very much an inspiration to me. I was so inspired that I decided to walk the walk, literally. I signed up with my family, to participate in Walk MS in Arnold and the Steppin’ Out for MS Night Walk in downtown St. Louis. At both of these events I volunteered, doing whatever. But at the next event, they told me, just to do the walk. Why? Well, the next event was the 50-mile Challenge Walk MS.
So I decided to do volunteer work for a few organizations, the National MS Society and the Drug and Alcohol NCADA. I received a
Oh boy. The first day started out great until I decide to change my shoes at the half-way point. BAD idea. The shoes I switched to
evidently were wrong for this walk. So I limped back with aching heals and knees. But the massage and medical volunteers did wonders for me. I finished all 50 miles. I may have felt sore, but I also had the feeling this just wasn’t enough, considering that there were people with MS there. But I did it and felt grateful that I did. It was great to walk into the T.R. Hughes stadium where my family and other families were there to greet us. Challenge Walk MS was a rewarding and enjoyable experience. The walkers, the volunteers and the people at St. Charles Community College couldn’t have been any nicer or helpful to me. I really wish people in general could have been there Saturday night to witness the candlelight vigil called the Circle of Strength ceremony. It gave me goose bumps to hear other people talk about their MS and what the Chapter has done for them. It inspired me so much that I realized that I needed to speak also, to let everyone know how much they have inspired me and how they made me feel welcome and part of their family.
CHAPTER HITS THE LOTTERY! In September of 2008, the Illinois Lottery released “It’s Double Time” $2 instant ticket to raise awareness and funds for MS research. It was the first-ever lottery where 100 percent of the net proceeds are used to help create a world free of MS. Those $2 tickets have certainly added up since then, as more than $1 million has been raised for the Society. The Gateway Area Chapter recently received its portion which amounted to $100,000. Net revenue from the sale of these tickets will only be used by grant awardees to fund research initiatives that develop and advance the understanding, techniques, and modalities effective for maintaining function, mobility and strength through preventative physical therapy or other treatments. For more information regarding, please visit the Illinois Lottery Web site at www.illinoislottery.com. 6
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Recently, with three rides under my belt, I saw an e-mail for volunteers ---just as I was starting my new job search. I came into the Chapter office to discuss what I could do and knew I could help make a difference with my photography and computer skills. Within my first couple of visits to the Chapter, I learned of the PATRICK GASIOR Society’s plan to set up computers I.T. AND PHOTOGRAPHY at the MS Wing, “The Heights,” VOLUNTEER at NHC of Town and Country. I BIKE MS PARTICIPANT was asked to help configure the computers and help get them upI first became aware of MS when I joined a Bike MS team at my office to-date. I gladly took the project on in 2003. Then in 2004, I met a friend and there are now 14 systems ready for the Assistive Devices that will be at work whose mom lives with MS funded by the state of Missouri. and that deepened my resolve to find out more about the disease, as As the computer installation was well as raise additional funds to find going on in the background, I also a cure. met other volunteers and helped out wherever I could including envelope
labeling and stuffing, as well as Web site editing. I also took event photos and video at the Challenge Walk MS Dean Team Automotive Walk 2009. It was amazing hearing from the participants what inspired them to persevere on their three-day, 50-mile journey. Volunteering for the Chapter continues to be extremely rewarding and I encourage you to discover the volunteer opportunities right for you.
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SUMMER SWIZZLE SIZZLES BY RAISING $54,000! The Summer Swizzle was held on June 5 at the Kemp Auto Museum. At the party, which featured an auction, everyone was on “island time” where guests wore tropical-inspired outfits and enjoyed live music as well as hors d’oeuvres and cocktails. Anne Graman and National MS Society Board member Bill Gillispie served as event co-chairs. The event raised more than $54,000. Gillispie is a member of the national board of trustees and conducts fundraisiers all over the country. For more go to www.Teamgillispie.com.
The First Annual Summer Swizzle event raised over $54,000 for the Gateway Area Chapter. Pictured (from left to right) are Bill Gillispie, Senior Vice President Marketing & Merchandising for Save-A-Lot and co-chair of the event; Phyllis Robsham, Chapter President; Beth Bauer, Director of Individual Giving; and Anne Louise Graman, co-chair of the event.
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FISCAL YEAR 2009 BOARD OF TRUSTEES
FROM THE BOARD The SLU and VA MS Centers Professor of Neurology have been NMSS affiliates since 2005 and 2006, respectively. St. Louis University MS Center Director In 1999 I joined the Clinical St. Louis VA Advisory Committee of the Chapter. In 2005 I joined the Missouri Citizens Action Network (MS-CAN), which I have cared for people with takes me to the Missouri multiple sclerosis (MS) ever Legislature every February, and since I moved to St. Louis in in 2007 I became a member of 1995. As I had completed a the Board of Trustees. Neuroimmunology fellowship at Columbia University in New My work with the National MS York, I was asked to develop an Society has been a consistently MS Center at the St. Louis VA positive, productive and very Medical Center. rewarding interaction. It is very refreshing to work with a group Some time later, this also of caring, knowledgeable and became a focus of my work at dedicated experts and pursue Saint Louis University. In 2005 goals that enable our clients I became director of the VA to lead more fulfilled lives, Spinal Cord Injury/Dysfunction obtain the services that they Service and since 2008 I have served as an attending physician need and deserve, find peer at the MS Wing at NHC of Town support as well as professional support, and facilitate access to & Country Healthcare Center. I medications. take care of people who might experience no limitations due This and the easy access to MS as well as of people with at both SLU and the VA to far advanced MS who require psychologists, nurses, rehab very specialized care. For nearly therapists, social workers, 10 years I have been engaged in dietitians and other medical trials of novel therapies for MS.
Dr. Florian P. Thomas
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specialists, allow our team to meet our patientsâ€™ needs in an easily accessible fashion. I believe that optimizing the knowledge about MS among patients, health care professionals and legislators is an important goal, especially during times of limited resources.
CALL TO ACTION Studies show that early and ongoing treatment with an FDAapproved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Societyâ€™s medical advisors recommend that people with MS talk with their health-care professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National MS Society is committed to ensuring that people with MS have the information and quality care they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at www. nationalmssociety.org or 1-800344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
PROGRESS BEFORE THEIR EYES RESEARCH MOTIVATES DONORS
sharp, maintain relationships as well as develop new ones.
“I plan on taking advantage of In the 15 years since Sherry Gibson was diagnosed with MS, researchers have developed many new treatments to my Art and History Museum slow the progression of MS. That progress is one of the main reasons why Sherry and her husband Mike donate memberships, becoming to the National MS Society. The ultimate goal for the Seeing the advancements in MS Gibsons is to find a cure, but this couple also appreciates more active in my church, research is one of the reasons that the MS Society’s many support functions such as peer volunteering in Mike and Sherry Gibson donate to support programs, exercise programs and educational the community, the National MS Society. seminars. spending more Sherry believes the available treatments have made a time with friends and relatives and travel some,” she said. positive difference in her life and believes she has found “The possibilities are endless.” the best MS doctor she could find. Sherry also attended the Women on the Move luncheon “I wanted a doctor who was up to date on the latest in April. research and had a good bedside manner,” she said. “ I found Dr. Anne Cross at the MS Clinic at Washington University and I feel I have the best doctor in St. Louis.”
Sherry’s onset symptoms were migraine headaches and temporary vision loss in one eye. The next year she started having numbness and pain in her hands and feet. Despite the symptoms of MS, Sherry remains very active. In regards to the MS Society, the couple attends annual research meetings, educational events, and Walk MS. “I’ve found that walks not only raise money for MS, but just as important, they raise awareness of MS and what it is among the public at large,” she added, “It’s very heartening to me to see other folks, whether they have MS or not, coming out to walk and making the effort to support MS.” During their spare time, Sherry and Mike like to golf, hike and bike. They are also active in their church. Sherry is recently retired from her Marketing Communication Manager position at AT&T and Mike is currently employed as the Director of the Internal Audit Department at Laclede Gas Company. While Sherry is enjoying her retirement she plans to continue to exercise, eat even healthier, keep her mind
“It was a lot of fun,” she said. “My two nieces, sister-inlaw and two dear friends joined me at the luncheon. The event was well organized, full of energy and inspirational. It was a great way to celebrate the courage of many wonderful women and raise money for MS. I can’t wait for the next one.” Originally from Marceline, Missouri, Sherry met “Air Force brat” Mike, originally from Kennett, Missouri, after she was diagnosed with MS. The defining moment in their relationship came when they were dating. “Our relationship was starting to get serious and I told Mike I had MS and asked him if he wanted out, “ she said. “He said he didn’t really know what MS was but that my disease was not a problem for him. Having that kind of support makes having MS easier to live with.” Sherry and Mike would like to continue their support for MS Society and would like to get even more involved in the organization. “The MS Society is a source of hope for those of us living with MS. Plus it provides ways for me to meet and talk to other people with MS. It’s nice to know you’re not alone,” Sherry said. TOLL FREE NUMBER 1 800 344 4867
ASK THE PROFESSIONAL PATIENT QUESTION: I’ve heard a lot about oral therapy treatments that are in the works for treating MS. What are they and how do they work? When will they available? Who will be a good candidate to use them? The arrival of a pill form of drug treatment for MS has been a long anticipated event for most people living with MS. Clearly our current therapies for MS have some decided limitations. Available treatments are incompletely efficacious, are burdensome to administer (with injections) and are largely applicable to only those with relapsing forms of the disease. Some of the more potent drugs also have limiting toxicities (e.g. risk of infection or cancer). There are now a number of oral medications in final phase trials that have potential for FDA approval and market availability in the next one to two years. The first of these for consideration is likely going to be Cladribine. This is a synthetic, immune suppressive anti-metabolite agent (a form of chemotherapy) that has been used in the intravenous form for leukemia treatment and was redesigned into an oral tablet for MS. It is taken in two short courses of 4-5 days during two sequential months a year. The drug has potent T and B white blood cell lowering effects and has been well tolerated in trials. It is on the fast track with the FDA (decision within six months). Not all patients will be candidates for this therapy given possible effects on blood counts and susceptibility to infection. 10
Fingolimod is also a pill currently in trials. It works by trapping lymphocytes (T and B cells) in the lymph nodes, reducing their numbers in the circulation and therefore in the brain and spinal cord. This pill is taken once a day. Side effects have included asthmalike respiratory effects and changes in heart conduction; no major toxicity thus far. Again the concerns are for as yet unknown infectious or cancer type complications. Laquinimod and Fumarate are two additional oral anti-inflammatory medications now in large placebo controlled final phase trials. Both appear to be relatively safe and free of toxic effects; neither is immune suppressive. Other possible oral therapy candidates include oral estriol, a hormone treatment that mimics late phase pregnancy, a variety of statins (cholesterol lowering agents) that have anti-inflammatory effects, and even Vitamin D, which has gotten a lot of recent press. A deficiency of the vitamin may be a risk factor in disease development, although its use as a therapy for established MS is unknown. It is difficult to predict which one of these agents will be right for you. Clearly side-by-side trials with our current immunomodulators will be required to decide if these oral
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Dr. Barbara Green MS Center Director Neurologist St. John’s Mercy Medical Center agents are superior to what we have now. Longer-term use will provide more solid data as far as tolerability and toxicity. Patients who have exhausted the available current options will be the best candidates to try these new medications. If you are very stable on your MS medication, it might be wise to take a wait and watch approach before making any switch. If you are a patient with a progressive form of MS (secondary or primary), you will likely have to wait even longer for these drugs to be studied in those populations. Just because an agent is “oral” does not mean that it will be optimal for every person with MS, so careful consideration of the data including study outcomes and drug side effects and potential toxicity will need to be foremost in the mind of any patient considering a therapy change.
Tony Dorn, pictured with his wife Brianne and son Cameron, set out a goal in his Corporate Achiever campaign and his persistence paid off.
Achievement Is Possible
PERSISTENCE PAYS OFF IN CORPORATE CAMPAIGN Tony Dorn knew all about the National MS Society and fundraising for the Chapter as a past Bike MS participant. So when Jim Blair, principal of the Moneta Group, where Tony works, asked him to join the MS Corporate Achievers campaign Tony didn’t hesitate. He even set a lofty goal to become a Mission Possible member - raising $1 for each of the 6,000 people living with MS in the Gateway Area Chapter. “I have a personal connection with someone who has MS,” Tony said. “Her symptoms aren’t as bad as some others, but I’ve seen it when it’s affecting her and how difficult it is. So it was really important for me to make Mission Possible.” In his Bike MS fundraising campaigns, Tony raised around $2,500 to $3,000, so he knew becoming Mission Possible would be a challenge. “I was nervous about the fundraising because of the economy,” Tony said. “When I raised money for the bike ride it wasn’t as much, so $6,000 was a
stretch for me. I had to expand my wings a little bit.” Tony didn’t put on any elaborate fundraisers or special events. His campaign was simple and persistent, with emails and phone calls. “Basically, I asked every person I know,” Tony said. “ I went through my contact list and made phone calls and sent emails. I let them know that the cause is important to me and that the Chapter does a lot to help people in the area. If I didn’t hear anything from them, I followed up.” His Corporate Achiever campaign paid off simply because he worked at it. “I was able to raise money effectively for two reasons,” Tony said. “The first reason - I care about the cause. The second reason is I followed up consistently. I wouldn’t call it badgering, I would call it gently persuading. I think too often people may send out a fundraising letter and leave it at that. If it is important to you, you should make sure and follow up when you haven’t heard anything.” Tony’s follow-up messages were two-fold. He made sure to thank
those who already donated and he tried some of that “gentle persuading” to get others to donate by providing a status report of how his campaign was going and how close he was to reaching his goal. “The tactic of giving a progress report works,” Tony said. “They may see the first email and forget, so the follow up emails are more like thanks to all who have already contributed and another bit of encouragement to donate for those who haven’t. Using the progress report was a good way to thank everyone.” During his campaign, Tony learned about the generosity of people and also had the opportunity to meet other professionals who participated in the MS Corporate Achievers campaign. “I learned that people really are generous and willing to give to a worthwhile cause even in tough economic times,” he said. “ I guarantee it was a lot harder this year for many of the people I worked with to write that $100 check than it would have been a few years ago. The Corporate Achievers campaign is also a great way to network and the reception at the end was a lot of fun.”
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FUNDING THE FUTURE
CHAPTER AWARDS ANNUAL SCHOLARSHIPS Many families struggle to cope with the financial impact of MS. To assist people affected by MS and their children who are pursuing a post-secondary education, the National MS Society provides scholarships to
programs. Awards are based on financial need, academic record and a personal essay. We
MS should not stand in the
St. Clair, Missouri Brittany’s mother Rhonda lives with MS and has a history of heart problems. Brittany provides support to her mother by running daily errands, such as grocery shopping and giving her mom daily injections. She plans to attend L’Ecole Culinaire or Saint Louis University in the fall to study culinary arts and become a pastry chef or head chef. In high school she was very active in track and the drama club. Brittany shared that the effects of her mom’s MS have made her a stronger person and that she can only hope she can be as strong as her one day.
parent and relies on Shelbie for support to take care of her, make sure household chores are done, and give her injections. Shelbie works to keep stress away from her mom. She also had to make a decision to stop dancing to support her mom. Shelbie plans to attend the University of Missouri – Columbia or Missouri State University. Shelbie shared that MS has taught her valuable lessons. She has learned to be independent, self- motivated, and responsible. She has learned that not everything in life comes easy – sometimes you have to help others to achieve your goals and sometimes things don’t go as planned.
way of an education. To be eligible, high school (or GED)
St. Louis, Missouri
graduates must be attending an accredited post secondary school for the first time (first semester). The Gateway Area Chapter is pleased to have six scholarship recipients for our 90-county service area. 12
St. Charles, Missouri Shelbie’s mother, Marcie, was diagnosed with MS before Shelbie was born. She is a single
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Superia’s mother Cynthia lives with MS and experiences both cognitive and physical problems due to the disease. Cynthia has received support through the Chapter’s financial assistance program. In supporting her mother, especially while she was in physical rehab and staying at the hospital, Superia assisted by
providing care for her younger brother, preparing meals, getting him to and from school, and helping him with homework. Superia plans to attend Southern Illinois University Edwardsville or Harris Stowe State University and study performing arts. In high school she was active in volleyball and singing through her church. Through living with her mom, she has learned that if you stay strong and positive through the situations that you encounter, you will have a better life. She has learned that if you love someone, you will do what it takes to see him or her happy and that love endures.
Orchestra, all while working 20 hours a week. Her family has faced many financial challenges since her mother’s diagnosis due to the cost of her mother’s health care and her father’s epilepsy. When her father lost his job in 2007, they had to make a choice to keep their home or make Cobra payments. Melissa shared, “Our life changes influenced by MS have taught us to never give up or sweat the small stuff. You have to handle it and make the most of whatever comes along.”
St. Charles, Missouri
Dardenne Prairie, Missouri Melissa’s mother, Pamela, lives with MS. Melissa plans to attend St. Charles Community College and then transfer to University of Missouri-Columbia to study journalism. While in high school, Melissa worked on the school newspaper and was a member of the St. Charles Community College
Chelsea’s mother, Marcene, lives with MS. Chelsea is an active volunteer in the community and also works 20 hours a week while in school. Chelsea plans to attend the University of Missouri – Columbia with her ultimate goal of becoming a clinical psychologist. Chelsea shares that her mom’s MS has taught her to value the simple things in life. Her mom has shown her to be thankful for everything you have, even things you don’t think about. “I
now value everything and see the bright side of life,” said Chelsea.
St. Louis, Missouri Sarah’s father Richard lives with MS. Sarah plans to attend Truman State University or Illinois Wesleyan University to study Vocal Music Education with the goal of becoming a high school choir director. Sarah provides great support to her family by assisting in running the house and taking care of her dad and brother. Many everyday outings are shaped by her father’s needs – ensuring wherever they go as a family is accessible. She shared that one of the most amazing things about their situation is that her family, especially her dad, keeps their sense of humor.
Congratulations to all the scholarship recipients. Check the Chapter’s website in October for information on how to apply for the 2010 scholarship program.
TOLL FREE NUMBER 1 800 344 4867
ANNUAL AWARDS NOMINATIONS
2009 ACHIEVEMENT AWARDS NOMINATIONS Does someone living with MS inspire you? Do you know someone who goes above and beyond to help someone with MS? The Chapter would like you to think about those people in your life who have made a difference and nominate them for the 2009 Annual Achievement Awards.
— Why does your mother or father deserve this award? — What do you and your mother or father do when you spend time together?
CAREGIVER OF THE YEAR:
nities for those with MS. Consider the questions below when writing your nomination: — How has the employer shown compassion toward those with MS? What are some examples?
This award recognizes a friend, family member, significant other or neighbor who goes — What can other companies learn from the nominee about accommodating above and beyond to care for someone with people with MS? MS. The Caregiver goes out of his or her way to help, and puts the needs of others above — Give a testimonial from an employee. Nominations must be received by Friday, their own. Oct. 16, 2009. Winners will be notified in — How have the company’s efforts November and honored at the Gateway improved the employee’s performance? Consider the questions below when writing Area Chapter’s Annual Dinner in January your nomination: 2010. Achievement Awards fall into the THE UNSUNG HERO AWARD: following five categories: — How long has the nominee provided care This award recognizes a Chapter volunteer who is dependable, inspiring and efficient. for someone with MS? INDIVIDUAL OF THE YEAR This Unsung Hero goes above and beyond This award recognizes what people with MS — In what ways does the nominee go above the call of duty to assist the Chapter in can accomplish in their personal and profesand beyond to care for those with MS? their mission: to create a world free of MS. sional lives. Consider the following when Think about the following questions when — Why does the nominee deserve this writing your nominations: writing your nomination: award? — What kind of obstacles has the nominee faced because of MS and how does he/ she overcome them?
Give a testimonial from the caregiver’s charge about the extraordinary care he/she receives from the nominee.
— How does the nominee inspire you?
EMPLOYER OF THE YEAR:
— Describe the accomplishments of the nominee, both personally and professionally.
MOTHER OF THE YEAR AND FATHER OF THE YEAR:
These awards recognize a mother and a father with MS who handle the daily challenges of parenthood with dignity, grace, strength, compassion and creativity. Think about the following questions when writing your nomination: — How long has your mother or father lived with MS? — What challenges has your mother or father faced in her/his battle? — How has MS impacted your relationship with your mother or father? 14
This award recognizes companies that are compassionate and understanding of those with MS. Nominees must meet the following criteria: has an employee with MS, supports and complies with the Americans and Disabilities Act, and has taken action to increase or enhance employment opportu-
— How do you define an unsung hero? —How does the nominee fit that definition? — How has this person gone above and beyond for those with MS? — Why does the nominee volunteer at the MS Society? — How long has the nominee been a volunteer?
2009 Achievement Awards Nomination Form:
Please detach and return this form with your nomination by Oct. 16, 2009 to National MS Society 1867 Lackland Hill Parkway, St. Louis, MO 63146 or fax to (314) 781-1440.
You may also visit our website at www.gatewaymssociety.org.
Category: _______________________________________________________ Name of Nominee or Company:_ ____________________________________ Nominee’s Address:_ ______________________________________________ Nominee’s Phone:_________________________________________________ Nominee’s Email:_ ________________________________________________ Name of Nominator:______________________________Phone:_____________ Signature:_______________________________________ Date:_____________
JOIN THE MOVEMENT: nationalMSsociety.org
WHEN A MEDICATION IS OFF LABEL Almost every medication used to treat a symptom of MS is prescribed off label. This means that the U.S. Food & Drug Administration ruled the drug safe and effective for another medical condition, but did not specifically approve it for use with MS. For instance, beta blockers are approved for treatment of high blood pressure and migraines, but they also help to reduce some tremors. Doctors often use these medicines “off label” to treat tremors in MS. Generic forms are available, so they are often covered by insurance companies. In the case of medications that do not have generic forms (such as Provigil for fatigue), insurance providers may not cover their use. “It comes down to how expensive a medication is,” said Dr. George Garmany of Associated Neurologists of Boulder, Colo. “It’s usually not an issue when there is a generic equivalent for a drug.” THE EXPENSE FACTOR But why are so many medications that are effective for MS symptoms not approved for that use?
“It costs a lot of money for drug companies to do the studies,” Dr. Garmany explained. “Once the drug is approved for its primary use, the company may not wish to cover the additional expense of trials to show that it is effective in MS.” THE RIGHT DIAGNOSIS Some symptoms of MS, such as depression, may allow for on-label use. “Depression is depression,” Dr. Garmany said. “The fact that someone has MS only modifies the way the depression is expressed. And if a patient has a legitimate diagnosis that would allow for on-label use, the doctor is best off using that.” COVERING YOUR COSTS 1 Ask your healthcare provider if there is a generic equivalent.
2 If there isn’t one, or your healthcare provider feels the off-label drug is best for you, file an appeal if insurance won’t cover it. “Every insurance plan must provide for an appeal of any ‘adverse determination’ made by the plan, including at least two levels of appeal,” said Kim Calder, director of Insurance Initiatives for the Society. The Society can help. Visit nationalMSsociety.org/ insuranceappeals. We also have a toolkit of appeal letters for doctors that relate to commonly prescribed offlabel treatments for MS. Visit nationalMSsociety.org/ appealtoolkit or contact us.
TOLL FREE NUMBER 1 800 344 4867
PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY Contact Us at National MS Society Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 314-781-9020 or 1-800-344-4867 www.gatewaymssociety.org MS Connection © 2009 A quarterly newsletter published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Newsletter Editor • Joe Cavato Writers Joe Cavato Patrick Gasior Stephanie Perry Keith Siebert Kimber Wilcox
Dr. Anne Cross Beth Norviel Hunter Richards Dr. Florian Thomas
NOTICE: The Gateway Area Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. The National Multiple Sclerosis Society does not endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable as information. The National Multiple Sclerosis Society assumes no liability whatsoever for the contents or use of any product or service mentioned. Proud member of
JOIN THE MOVEMENT: nationalMSsociety.org
FROM THE PRESISDENT
A LETTER FROM THE PRESIDENT PHYLLIS ROBSHAM
With our annual John L. Trotter Research event right around the corner, it is an exciting time to learn about the latest and greatest going on in the world of MS research. We are fortunate to have wonderful research facilities right here in our own backyard, with some of the brightest minds in the world looking into the causes and a cure for MS. Unfortunately, however, one of the biggest things on researchers’ minds right now is the decrease in funding available for important research projects. The economic situation we are all dealing with has hit the MS research community, and is having a huge impact. As you can see in Dr. Anne Cross’ cover article, we are facing challenges in acquiring funding for research projects as the current economic state has affected progress. So, we have a lot of work to do. This means that donations from individuals are more important than ever, and we must continue to work together to ensure that we can continue to fund the important research that moves us closer to a world free of MS. So, how can you help? If you are able, please donate. If you cannot provide financial support, spread the word. We need to make sure everyone understands the importance of moving MS research forward. Together, we can make a difference.
happenings John L. Trotter Research Program John L. Trotter Nervous System Repair Research Program Thursday, September 24, 2009 Nervous System Repair 7-9 p.m. Registration
Keynote Speaker: Bruce Trapp, PhD Chairman, Neurosciences Cleveland Clinic
LEARNING OBJECTIVES g Discover how repair and regeneration of nerves hold promise for preventing permanent damage and restoration of function. g Learn how nervous system repair research has the potential to stop and possibly reverse disease progression resulting in improved quality of life for people with MS. g Learn what researchers are discovering about the body’s natural repair process to restore myelin and preserving neurological functions —findings that can ultimately be applied to people with MS. Cost: $15 (fee waivers are available) Early Registration Discount: $12.50 (Register by August 31, 2009) Registration Deadline: September 18, 2009 You can also join via teleconference! Call-in number will be provided. There is no fee for the teleconference. This program sponsored by Bayer Healthcare, Biogen Idec, Teva Neuroscience Wachovia and United Access.
Thursday, September 24, 2009 7-9 p.m. Sheraton Westport Hotel – Lakeside Chalet
Name_____________________________ Guest name_ ________________________ Address _ __________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ Email_ ____________________________ Do you prefer to receive your confirmation via mail or e-mail?_ ____________________ Will you be joining us live at the program or via teleconference?_ __________________ (If via teleconference please disregard next two questions)_ Do you prefer a vegetarian meal?_ ___________ Do you use a mobility device? If yes, what type?______________________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover Card # _ ___________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.
Sheraton Westport Hotel – Lakeside Chalet 191 Westport Plaza St. Louis, MO 63146
Gateway Area Chapter
Experience the Benefits of Creative Writing
Monthly Creative Writing Series Starts October 17
A writing instructor will lead this 12-month series. No experience is necessary – the group is offered in a low-key, relaxed environment where you can socialize, take part in fun, creative writing activities, and share writing with others.
Saturdays, monthly, October 2009 – September 2010 1 – 3 p.m. First Session: October 17, 2009. St. Louis County location: Kaldi’s Coffeehouse Chesterfield Commons Village 17211 Chesterfield Airport Road Chesterfield, MO 63005 Registration: Contact Abby Lockett Benefiting Lives Writing Group Instructor, at firstname.lastname@example.org or 314-256-9847. Free parking is available. Please contact Abby to discuss transportation needs.
Saint Louis University’s MS Center invites you to join its monthly creative writing group. Creative writing is a method to discover and replenish a sense of well being. By participating you will begin a rich tradition of sharing stories through your perspective. The hope is to reach far and wide by benefiting lives on individual and community levels.
You will have the opportunity to share and receive feedback on your writing from the instructor and other members of the group. You can experiment with different writing techniques and explore the world of writing at your own pace. The program is provided through an unrestricted educational grant from Bayer HealthCare.
Benefiting Lives Writing Group
Benefiting Lives Writing Group Advisor
Instructor Abby Lockett, MA English Saint Louis University Department of Counseling & Family Therapy MA candidate
Amy C. Rauchway, DO Assistant Professor of Neurology Department of Neurology & Psychiatry, Saint Louis University School of Medicine
happenings Delivering A Smile Year Round Program Continues To Grow, But Needs Your Help HAPPENINGS
The giving season isn’t limited to the winter holidays. Twice a year, Chapter staff and volunteers visit individuals living with MS who are homebound or living in long-term care facilities. Along with support, witty conversation, and information on the Chapter, visitors also bring a “smile” along with them. This is a small gift that the individual has personally requested. Some of those smiles included: a new pair of pajamas in a specific color, an Elvis movie and a Sammy Hagar CD. Cologne, lotions, and socks are also popular requests. Whatever the item may be, it is guaranteed to make the individual smile. The visits are made in December and July. The last two rounds of visits touched more than 160 people living with MS. Jody Martin, a Chapter volunteer, delivered to three individuals in Cuba, MO for the second year in a row. Two of the individuals were living at a long-term care facility and Jody spent some time there chatting and playing bingo. She even set one individual up on Facebook. Jody is a great example of the kind of volunteers a program like Deliver A Smile needs. Not only did she stop by and deliver smiles on her way out of town, but she also helped wrap all the gifts! This program is growing and has the potential to touch more people living with MS. We need volunteers to help. Whether it’s calling clients to see what will make them smile, shopping for the smiles, wrapping the smiles or delivering the smiles, we have something for everyone.
Although the visits are only twice a year, donations and referrals are accepted year round. We would like to deliver to at least 100 individuals this December. Please contact the Chapter if you know of someone living with MS who is home-bound or in a long-term care facility and would love a visit and a smile. If you are interested in sponsoring a smile, please go to www.gatewaymssociety.org, click “Programs and Services” and “Deliver A Smile Program.” We accept monetary donations or gift cards to general retailers (i.e. Target, Wal-Mart, Walgreen’s, Kohl’s, etc.) or contact Kimberly Wilcox at 314-781-9020 (option 2) or at kimberly.wilcox@ gatewaymssociety.org
Gateway Area Chapter
Family Weekend -Touch of Nature
Family Weekend at Touch of Nature Registration
It’s time to get away. Family Weekend at Touch of Nature is scheduled for October 16-18. The colors of fall will welcome you and your guests to a relaxing and rustic family getaway. Located approximately 2-1/2 hours from St. Louis, just outside of Carbondale, Il, Touch of Nature offers a secluded and accessible retreat.
Name_______________________________ Address______________________________ City/State/Zip__________________________ Home phone___________________________ Work phone_ __________________________ Email_ ______________________________ Guest Names and Ages_____________________ Does anyone in your party use a mobility device?_____ Does anyone in your party require a vegetarian meal?_ ___ Would you like to request a fee waiver?___________
ACTIVITIES INCLUDE: g Accessible hayrides g Arts & Crafts for all ages g Campfire and s’mores g Accessible horseback and pony rides g Nature hikes and owl prowling g ‘Kid’s Only’ adventure activities g CarePartner social program g Tai Chi/Yoga class for people with MS g Accessible pontoon boat rides Early registration (before Oct. 2)= $70/per person Regular registration (after Oct. 3) = $85/per person Live in the area? Come join us for the day! Day only option: $25 per person (available for Saturday or Sunday) A limited number of fee waivers is available for this program and/or transportation. Please fill out the registration form to request a waiver. Kids 3 and younger are free. Registration includes meals, activities and lodging. Registration Deadline: October 9 This program sponsored Biogen Idec and Boeing. 20
Family Weekend at Touch of Nature October 16-18, 2009 Touch of Nature Environmental Center 1206 Touch of Nature Rd Makanda, IL 62958
Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover Card # _ ___________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.
happenings Female MS Volunteers Needed for Research Study
This study is being conducted by Anne Cross, M.D., Professor, Washington University, Department of Neurology. If you are interested, call Debra Kemp, the study coordinator at 314-362-3839 or email kempd@ wusm.wustl.edu for further information. This trial is funded by the National Multiple Sclerosis Society and the National Institutes of Health. Website: Go to www. gatewaymssociety.org gPrograms g Services gLocal gClinical Trials.
Saturday, October 3rd, 2009 10 a.m. - 4 p.m. Paraquad Inc. 5240 Oakland Avenue Saint Louis, MO 63109
The National MS Society has once again partnered with Paraquad to bring you the Assistive Technology Consumer Fair. This unique event provides people with disabilities the opportunity to view exhibits of products and services that are designed specifically for their needs. It is a great opportunity to learn about the latest equipment on the market and about local resources. The AT Fair will also showcase special events such as adaptive sports and recreation. This free event offers a unique experience that people with disabilities look forward to attending year after year. While you are at the AT Fair stop by the Chapterâ€™s booth to meet staff, learn about our latest programs, services and events and receive a free prize (while supplies last). For the first time, Paraquad will be hosting this exciting event at their new location on Oakland Avenue, next to the St. Louis Science Center. The AT Fair parking and entrance will be on the southeast corner of the building south of the Paraquad offices. For more information about the AT Fair visit www.atfair.org.
Tiffany, diagnosed in 2004
Washington University in St. Louis is looking for women with relapsing-remitting MS for a 24-month study to see if there are less relapses with the treatment of Copaxone injections plus oral estriol as compared to the treatment of Copaxone injections plus oral placebo. Candidates requirements are: g Women 18-50 years old g Diagnosed with definite RRMS g Able to walk without any aids such as cane or walker g Had at least one relapse within the last two years You are not eligible for the study if you are pregnant, breastfeeding, smoke, or have other serious medical conditions. Those treated in the past with Copaxone, Avonex, Rebif or Betaseron will NOT BE EXCLUDED.
Assistive Technology Consumer Fair
Gateway Area Chapter
TALK MS GROUPS
MISSOURI Cape Girardeau
3rd Saturday, 10 am
Call for Dates
2nd Tuesday, 1 pm
Call for Dates
3rd Monday, 6 pm
New London Poplar Bluff St. Charles West Plains
2nd Monday, 7 pm 2nd Sunday, 2 pm 3rd Sunday, 3pm
St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 University of Missouri-Columbia Quarterdeck Bldg., Rm. 118 2401 Lemone Ind. Dr., Columbia, MO 65201 Disability Resource Assn. 420B S. Truman Bl., Crystal City, MO 63019 Callaway Community Hospital 10 South Hospital Drive, Fulton, MO 65251 St. Mary’s Health Center, Assembly Room 100 St. Mary’s Medical Plaza, off of West Dunklin Jefferson City, MO 65101 Call for Location
Sharon (573) 332-8148 Deanna (573) 882-6767 Marlene (636) 464-2533 Sharon email@example.com Diana (573) 642-9234 Chris (573) 645-0130 firstname.lastname@example.org Debby (573) 267-3365 email@example.com Tamra (573) 568-3912 firstname.lastname@example.org
First Christian Church 1601 North Main, Poplar Bluff, MO 63091 Hardees Restaurant at Mid Rivers Mall Dr. and Jim (636) 940-1521 Mexico Rd.
3rd Wednesday, 5 pm
Ozark Medical Ctr. Shaw Medical Bldg. 2nd Fl. Charline (417) 469-1068 909 Kentucky St., West Plains, MO 65775 Sally (417) 469-4842
1st Thursday, 7pm 2nd Saturday 1:30pm 2nd Tuesday, 7 pm
Weber Road Library Linda (314) 544-5623 4444 Weber Rd, St. Louis, MO 63123 St. John Rehab Hospital, 14561 North Outer Kevin (314) 841-3755 Hwy 40, St. Louis, MO 63017 Living Word United Methodist Church Walt (636) 256-9171 17315 Manchester Rd., Wildwood, MO 63038 Mary (314) 542-9303 NMSS Office Gateway Area Chapter Kidsho4@swbell.net 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Michelle (636) 447-5407
ST. LOUIS METRO Affton Mid-St. Louis County West County Perspectives on MS Networking Group (mid-40s & under) ILLINOIS Alton/Wood River NEW GROUP! Belleville/ O’Fallon 22
1st Saturday, 10 am 3rd Tuesday of each month 7pm-9pm 2nd Sunday, 2:30pm
The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095
First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269
Amy (618) 235-4226
happenings TALK MS GROUPS ILLINOIS CONT’D 2nd Tuesday, 7 pm
Gateway Regional Medical Ctr, Pascal Hall 2100 Madison Ave, Granite City, IL 62040
4th Tuesday, 6:30 pm
Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056
Oct. 28 7pm Oct. 8, 6 pm
LINC, Inc. 120 East A Street, Belleville, IL 62220 Faith Lutheran Church 1104 N. 42nd St. Mt. Vernon, IL 62864 Heartland Regional-Medical Center Classroom #2 3333 West DeYoung, Marion, IL 62959
Metro East Mt. Vernon Southern Illinois
2nd Tuesday, 5pm
Beth (618) 447-5456 Susan (217) 324-7106 email@example.com Ruth (217) 999-8924 firstname.lastname@example.org Diane (618) 235-8823 Earhart500@aol.com
Terri (618) 242-8448 Robert (618) 983-0321 Lisa (618) 983-0443
SPECIALIZED GROUPS Men’s Chat MS Fun, Friends & Food Veterans with MS CarePartner and Family Group
Last Tuesday of the Telephone group month, 7 pm David C. Pratt Cancer Center Nov. 4 St. John’s Mercy Medical Center 6pm 607 S. New Ballas Rd., St. Louis, MO 63147 2nd Wednesday, Veterans Admin. Medical Center 1 Jefferson 10 am Barracks Dr., St. Louis, MO 63125 3rd Wednesday, 6:30 pm
Joe S. email@example.com Michelle (314) 251-6400 Debbie (636) 579-0264 firstname.lastname@example.org Penny or Patti (314) 652-4100 ext. 4523 email@example.com
NMSS Office Gateway Area Chapter Allison (800) 344-4867 1867 Lackland Hill Parkway, St. Louis, MO 63146 firstname.lastname@example.org Change from 7pm to 6:30pm
Talk MS Group Open House Your local Talk MS group is hosting an open house and you are invited! If you are a current member, or have been interested in learning more about Talk MS groups, this is an exciting opportunity to see first hand how Talk MS is moving forward. Chapter staff will be attending to let you know about the programs and services available to you. There is no fee to attend but you must register, so RSVP today at 1-800-344-4867. Feel free to tell a friend or bring a guest. All Talk MS Group Open Houses will take place near the location of regular group meetings. Please review the Talk MS listings above and on page 22 to learn more. www.gatewaymssociety.org
Upcoming Talk MS Group Open House Schedule: Poplar Bluff Sunday, October 11, 2 p.m. Litchfield Tuesday, October 27, 6:30 p.m. Metro East Wednesday, October 28, 7 p.m. St. Charles Sunday, November 15, 3 p.m. 23
Gateway Area Chapter
New Connections Registration
Come meet with other people who have been newly diagnosed with MS in the past two years or who have recently moved to the area. Chapter staff will be attending to let you know what the National MS Society does and how it can help.
Please mark which event you would like to attend:
AJ, diagnosed in 2000
St. Charles/St. Peters, MO Thursday, November 12 Saint Charles Coffee House 3821 McClay Road Saint Peters, Missouri 63376 Time: 6-7 p.m. Registration deadline: November 9 St. Louis-North County, MO Thursday, December 10 STL Java and Café 2123 Charbonier Florissant, MO 63031 Time: 6-7 p.m. Registration deadline: December 7
St. Charles/St. Peters, MO Thursday, November 12
St. Louis-North County, MO Thursday, December 10
Name_______________________________ Address______________________________ City/State/Zip_ _________________________ Home phone___________________________ Work phone_ __________________________ Email_ ______________________________ Date of diagnosis_ _______________________ Guests (please include age___________________ Does anyone in your party use a mobility device______ Does anyone in your party have any dietary restrictions?_ __________________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440
Have a cup on us! The Chapter will provide the first round of drinks and treats for everyone. There is no fee to attend but you must register, so RSVP today at 1-800-344-4867. Feel free to tell a friend of bring a guest. 24
To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.
happenings Teleconference Registration
Mark your calendars for every second Monday of the month for the Midwest Teleconference Series. Please note that an additional teleconference will be available with the John L. Trotter Research Program. The series topics from September through December are:
Please mark the sessions in which you would like to participate:
Beyond the Basics – Alternative and Complementary Therapies for MS Monday, September 14, 7-8 p.m.
Beyond the Basics – Alternative and Complementary Therapies for MS
John L. Trotter Research Program – Nervous System Repair Thursday, September 24, 7-9 p.m.
Intimacy and MS October 12, 2009, 7-8 p.m.
Fitness MS Monday, November 9, 7-8 p.m.
Oral Medication Update Monday, December 14, 7-8 p.m.
Speaker: Rock Heyman, MD, University of Pittsburgh Date: September 14, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of exercise activities adapted to people with MS.
John L. Trotter Research Program – Nervous System Repair
Speaker: Bruce Trapp, PhD, Chairman, Neurosciences, Cleveland Clinic Date: Thursday, September 24, 2009 Time: 7-9 p.m. Objectives: Learn what myelin is, why myelin is important, how new myelin is created and increase knowledge in therapies in progress to try to enhance repair.
Intimacy and MS Answers to the Questions You Always Wanted to Know but Were too Afraid to Ask
Speaker: Heather Raznick, MSW, LCSW, Clinical Sex Therapist, Licensed Psychotherapist Date: October 12, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of sexual issues that affect people with MS and have the opportunity to ask sensitive questions while remaining anonymous.
Fitness MS - Eating Healthy and Staying Fit Through the Holidays
Speaker: Tony Maslan, CSCS Date: November 9, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of fitness and wellness activities adapted for people with MS.
Oral Medication Update
Speaker: Dr. Robert Naismith, John L. Trotter MS Center, St. Louis, MO Date: December 14, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of latest information on oral medications.
Midwest Teleconference Series
Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ Email_ ____________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend. This program sponsored by Bayer Healthcare, Biogen Idec, EMD Serono Inc., Pfizer Inc. and Teva Neuroscience.
Gateway Area Chapter
Wellbridge Athletic Club –( Clayton) Contact: Susan (314) 746-1500
Carondelet YMCA Contact: Diane E. (314) 353-4960
Wellbridge Athletic Club – (Town & Country) Contact: Susan (636) 207-3000
Center of Clayton Contact: Diane (314) 353-4960
Bridgeton Community Center Contact: Cole (314) 739-5599
Chesterfield JCC Contact: Fanchon (314) 432-5700 x3157
Everyone can participate in an aquatics class. You don’t need to know how to swim – you just need the desire to improve yourself, have fun, and make friends.
g The buoyancy of the water reduces your body weight, meaning less stress on joints! g Better cardiovascular fitness is gained using the resistance of the water! g Water keeps you cool and guards against fatigue, so you can exercise longer! Limited fee waivers for MS Aquatics programs are available. Please call 1-800-344-4867 for more information.
Therapeutic recreation programs brought to you in part by unrestricted educational grants from Bayer Healthcare, EMD Serono Inc., Pfizer Inc., United Access and the United Way. 26
Emerson Family YMCA (North County) Contact: Georgia/Chris (314) 521-1822 Hazelwood Community Center Contact: Jill A. (314) 731-0980 Jefferson College (Hillsboro) Contact Christina C.: (636) 942-3000 x382 Mid-County YMCA (Brentwood) Contact: Sandi (314) 962-9450 Show Me Aquatics Contact: Carolyn (636) 896-0999 South City Family YMCA Contact: Rich (314) 644-3100 St. Charles County YMCA Contact: Kay W. (636) 928-1928 The Pointe at Ballwin Commons Contact: Susie (636) 227-8950 Washington Four Rivers Family YMCA Contact: Ann (636) 239-5704
Columbia Activity & Recreation Center Contact: Laurie (573) 874-7460 Jefferson City YMCA Contact: Pat G. (573) 761-9021 Mexico Family YMCA Contact: Consuelo (573) 581-1540 Longbranch YMCA (Classes taught at the Comfort Inn pool) Contact: Martha M. (660) 385-1818
SOUTHERN AND METRO ILLINOIS
John A. Logan College Contact: Chris G. (618) 985-3741 ext. 8504 Jerseyville Wellness Center Contact: Jennifer R. (618) 498-3500 O’Fallon Community YMCA Contact: (618) 628-7701
Black River Coliseum Contact: Mandi E. (573) 686-8009 Cape Girardeau Municipal Pool Contact: Pat Grebe (573) 335-4040
Yoga Sites ST. LOUIS:
Yoga St. Louis Iyengar Yoga Class 3305 Jamieson Ave. St. Louis MO 63139 Tuesdays, 4:30 – 6 p.m. (Gentle Yoga Class) Call: Kerry 1-800-344-4867 St. John’s Mercy Medical Building (South County near I-270 & Tesson Ferry Rd.) 12348 Old Tesson Rd. , St. Louis MO Instructor: Linda Whitney (314) 729-0181 Tuesdays Sept. 15 – Nov. 5 and Nov. 10– Dec.15 5:30 – 6:30 p.m. (Beginner Class) 7 – 8 p.m. (Gentle Yoga Class) Thursdays Sept. 17 – Nov. 7 and Nov. 12– Dec.17 9:30 a.m. (Beginner Class) Cost: $54 for 6 weeks and $72 for 8 weeks.
Elm Street Yoga 904 Elm St, Suite 210, Columbia, MO 65201 www.elmstreetyoga.com Tuesdays, 1:15 - 2:15 p.m. Thursdays, 4:30 - 5:30 p.m. Instructor: Linda Lutz Cost: $35 for 5 classes Class size limited to six people Contact: Linda (573) 441-8566 or email@example.com
Yoga Day in Columbia, MO HAPPENINGS
MS Society Office 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Cost: $10/ class Call: (314) 781-9020 or 1-800-344-4867 Mondays 10 - 11:30 a.m. (Iyengar Yoga Class) Instructor: Tiki Misra Wednesdays 10 - 11:30 a.m. (Iyengar Yoga Class) Instructor: Kathy Simon
METRO & SOUTHERN ILLINOIS
Come out and try a
Sukha Yoga Center 18 South High St., Belleville, IL Instructor: Sarah Fraser Cost: call for class times/fees Contact: Sarah (618) 236-9642 Web site: www.sukhayogacenter.com
at Elm Street Yoga in Columbia, MO followed by an opportunity to socialize with fellow participants over lunch at the Upper Crust.
One-O-One Yoga 101 South Graham Carbondale, IL Contact: Sarah Miller, 618-457-8186 Cost: Call for class times/fees Web site: www.center101yoga.com
SOUTHEAST MISSOURI PARC Fitness Center 2620 N. Westwood Blvd Poplar Bluff, MO 63901 Phone: 573-686-5985 Mondays, 7 - 7:45 p.m. Wednesdays, 6 - 7:30 p.m. (slower paced class) Walk-ins welcome! Instructor: Mindy Matthews
FREE YOGA CLASS
Register soon! Space is limited to 12 people! Date: September 26, 2009 Time: Yoga from 10:30 – 11:30, lunch from 11:45 – 1 p.m. Location: Elm Street Yoga 904 Elm Street Suite 210 Columbia, MO 65201 Registration deadline: September 18 To register call 1-800-344-4867 or online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend. 27
Gateway Area Chapter
The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These are similar to the Chapter “Talk MS” groups but each call will focus on a different topic relating to wellness. Upcoming topics include: • How to Count Everyday Activity as Exercise (Sept. 17) • Yoga for MS (Oct. 29) • Aquatics for MS (Nov. 19) • Tai Chi for MS (Dec.17) Participating in monthly calls is an opportunity to share ideas and provide encouragement and support to each other on challenges and successes one experiences while seeking and actively participating in exercise programs. The teleconferences are facilitated by Toni Kodner, a volunteer with extensive knowledge of MS and wellness and are from 7-8 p.m. Each month a guest speaker will also share expertise on a specific topic. The Wellness Network is free and provides resources to a wide variety of people with MS of all abilities. It is also helpful to those who are new to seeking out wellness opportunities and need some guidance and direction. If you are interested in becoming a member of the Wellness Network, please call 1-800-344-4867 or visit our website to register for the monthly calls.
Getting to know the facilitator, Toni Kodner: Toni Kodner has been living with MS for over 20 years. She is very physically active and currently takes yoga classes two days per week and is dedicated to her own home exercise program. She volunteers weekly at the Chapter as a therapeutic exercise volunteer.
Wellness Network Registration Please mark the sessions in which you would like to participate:
How to Count Everyday Activity as Exercise Thursday, September 17, 2009, 7-8 p.m.
Yoga for MS Thursday, October 29, 2009, 7-8 p.m.
Aquatics for MS Thursday, November 19, 2009, 7-8 p.m.
Tai Chi for MS Thursday, December 17, 2009, 7-8 p.m.
Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ Email_ ____________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.
This program sponsored by the United Way.
happenings The Heuga Center for MS JUMPSTART Program
Center of Clayton 50 Gay Ave Saint Louis, MO 63105 http://www.ci.clayton.mo.us/ Free Program – Lunch provided! Please join us for this free, one-day introduction to The Heuga Center’s wellness philosophy for people living with MS and their carepartners. Learn wellness strategies for managing MS you can implement immediately. Presentations & Workshops:
Eat well, Prepare easily, Be well
Utilizing Wii for Your Exercising Pleasure Cynthia Gackle, Occupational Therapist University of Minnesota Fairview, MN
Support Partner Concerns Interactive Discussion
Rosalind Kalb, PhD, Psychologist Vice President, Professional Resource Center National Multiple Sclerosis Society New York, NY Register today by calling or emailing Ron Wheeler at 1-800-367-3101, ext 1277 or firstname.lastname@example.org.
Baldwin Sanders, Dietician Western Carolina University Cullowhee, NC
Presented by: The Heuga Center www.heuga.org
Julianne Zlatov, Occupational Therapist Private Practice Denver, CO
In collaboration with: National MS Society
They will: g Discuss how nutrition is related to MS g Explain easy ways to prepare nutritious meals g Demonstrate how to work smarter, not harder in the kitchen g Give shopping ideas
Saturday, November 7 9 a.m. – 3 p.m.
Supported by: Acorda Therapeutics, The Athwin Foundation, Bayer HealthCare Pharmaceuticals, EMD Serono Inc., Genentech Foundation, Genentech Inc, The Mellam Family Foundation, Rolex Watch USA, The Roy A Hunt Foundation, Teva Neuroscience
Gateway Area Chapter
Chapter Calendar SEPTEMBER
19 24 26 26 26 27
New Connections Social Gathering South County, St. Louis, MO Bike MS: Express Scripts Gateway Getaway Ride 2009, Columbia, MO Bike MS: Express Scripts Gateway Getaway Ride 2009, Columbia, MO Beyond the Basics â€“ Alternative and Complementary Therapies for MS Teleconference Walk MS Washington, MO John L. Trotter Research Program, St. Louis, MO Walk MS Mt. Vernon, IL Walk MS Bootheel Area, MO MS Yoga Day, Columbia, MO Walk MS Ste. Genevieve, MO
OCTOBER 3 11 12 16 17 17 30
Consumer Assistive Technology Fair, St. Louis, MO Talk MS Open House, Poplar Bluff, MO Midwest Teleconference Series Family Weekend Touch of Nature Carbondale, IL Family Weekend Touch of Nature Carbondale, IL Creative Writing Series Begins,
18 22 27 28
St. Louis, MO Family Weekend Touch of Nature Carbondale, IL Wellness Network Talk MS Open House, Litchfield, IL Talk MS Open House, Metro East, IL
NOVEMBER 7 9 12 13 14 15 18 19
Wellness Program with Heuga Center, St. Louis, MO Midwest Teleconference Series New Connections Social Gathering, St. Charles, MO Peer Support Volunteer Training, St. Louis, MO Peer Support Volunteer Training, St. Louis, MO Talk MS Open House, St. Charles, MO Carepartner Dinner Wellness Network
New Connections Social Gathering, North County, St. Louis, MO Midwest Teleconference Series Wellness Network
Carepartner Appreciation Dinner
Every November the President of the United States proclaims November as National Family Caregivers Month. Please join us for an informal evening as we give thanks for the love of our family and friends, and gather in support each other as care partners. The CarePartner Appreciation Dinner is scheduled for Wednesday, November 18. Be sure to save the date!
Market Place Ad Ultra Comfort Lift/Recliner Chair In excellent condition. Forest green upholstery. 300 lb weight capacity. Includes battery back-up. Asking $300. Call Louise in St. Peters after 5 p.m. at (636) 441-7628 Accessible Home 2-bedroom home with 2 accessible baths and a finished basement. Includes an accessible kitchen and an elevator from the main floor to the basement. Located in South City St. Louis. Please contact Steve at (314)351-9476 for more details. 1998 Ford Windstar Van Approx. 65,000 miles, with electric-powered lift. $3000. Call Sharon at (314) 533-0322.
happenings MS Navigator
Program Helps You Plot Your Course With MS Volunteers Needed! MS Navigators provide information and referrals due in part to the hard work of Community Service Investigator (CSI) Volunteers. CSI Volunteers research and investigate resources throughout the 90 counties in the Chapter. If you have a passion to find resources in your community and love keeping track of fine details, then contact the Chapter for more information on how to become a Community Service Investigator Volunteer. To speak with an MS Navigator, or to become a CSI Volunteer dial 1-800-344-4867, Option 1 or visit www.gatewaymssociety.org.
Check Out New and Free Info in Our Lending Library
g Sex is NOT a 4 Letter Word Dr. Frederick Foley, PhD, and Heather Raznick, MSW, LCSW, present information on sex and MS. This is a live recording of the April 4 program offered by the Gateway Area Chapter, available on DVD.
The Lending Library has new and exciting books, audio tapes and DVDs! Using the Lending Library is as easy as requesting an item and having it mailed right to your door. You can request items by calling us or visiting the “Lending Library” section of the Chapter website. View the entire catalog of items available at www.gatewaymssociety.org, or request a catalog by mail. Here are just a few of the new items available for you to check out:
g Fighting Fatigue in Multiple Sclerosis A book by Nancy Lowenstein on practical ways to create new habits and increase your energy.
g Employment: Staying Healthy on the Job and Assistive Devices Dr. Elizabeth Crabtree leads this teleconference offered by the NMSS Midwest Teleconference Series, available as an audio CD.
g Nolo’s Guide to Social Security Disability: Getting and Keeping Your Benefits, 4th edition. Written by David Morton III, MD, this is an essential book for anyone dealing with a long-term or permanent disability. g Ask For It: How Women Can Use the Power of Negotiation to Get What They Really Want Authors Linda Babcock and Sara Laschever have devised a four-phase program of strategies and exercises to determine what you want, what you’re worth and how to increase your bargaining power.
When searching for information about MS or a referral for local resources, MS Navigators are there to respond to your unique needs. MS Navigators are highly skilled professionals equipped to respond to the varied needs of people living with MS, their family and friends. MS Navigators can help you find what you need to maintain independence, connect with others living with MS, deal with a crisis, and access educational and wellness programs in your area. Resources include information for people newly diagnosed, treatment options, symptom management strategies, facing financial challenges, managing life changes and much more.
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Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 RETURN SERVICE REQUESTED
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happenings St. Louis, MO 63146
making the most of life and the least of MS In this issue John L. Trotter Research Program. . . . . 17 Creative Writing Group. . . . . . . . . . . . . 18 Deliver A Smile . . . . . . . . . . . . . . . . . . . 19 Family Weekend. . . . . . . . . . . . . . . . . . . 20 Family Weekend. . . . . . . . . . . . . . . . . . . 20 Clinical Trial. . . . . . . . . . . . . . . . . . . . . . . 21 Assistive Technology Fair. . . . . . . . . . . . 21 Family Weekend. . . . . . . . . . . . . . . . . . . 20 Talk MS Groups . . . . . . . . . . . . . . . . 22-23 New Connections . . . . . . . . . . . . . . . . . 24 Midwest Teleconference Series . . . . . . 25 Therapeutic Recreation. . . . . . . . . . 26-27 Wellness Network. . . . . . . . . . . . . . . . . 28 Heuga Center JUMPSTART Program . . 29 Chapter Calendar. . . . . . . . . . . . . . . . . . 30 Resource Center. . . . . . . . . . . . . . . . . . . 31
“We hope you enjoy the new look of “Happenings.” Check inside to see all of the upcoming Chapter programs and services for September through December (pgs. 17-31). Below are some highlights of the upcoming quarter. This is an exciting time for MS Research and the Chapter is very excited to welcome Dr. Bruce Trapp at the John L. Trotter Research Program on September 24 (pg. 17). There is also a need for clinical trial participants (pg. 21).
National Multiple Sclerosis Society
If you’re looking for ways to express yourself and share your emotions, the creative writing group (pg. 18) may be for you. There are also plenty of ways to learn about issues related to living with MS from the comfort of your own home. Join one of the teleconferences (pg. 25) or the Wellness Network (pg. 28). You also don’t want to miss the Heuga Center for MS JUMPSTART Program (pg. 29) or the Assistive Technology Fair (pg. 21).”
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