MS Connection - Fall 2012
The MS Connection is a quarterly publication featuring articles and stories about MS research, education, fundraising events, programs, services, and the people that are making a big difference in the fight against multiple sclerosis.
MS Connection magazine Our Vision: A world free of multiple sclerosis fall 2012 gateway area chapter Funding research to change lives now and forever. Just as MS is a multifaceted disease, so must be our approach to developing solutions. Our commitment is a comprehensive strategy focused on three distinct results. Our Research Fundraising Goal: STOPPING THE DISEASE We have to stop all disease activity and prevent further progression for people who already have MS. He alt We will raise $250 million for MS research by the end of 2015 Restoring What's Been Lost We must restore all function that has already been lost to nervous system damage. ENDING MS FOREVER We are looking toward the future and are working to eliminate MS from our world and prevent it from ever occurring in the future. s rvou l ne air a r t p Cen tem re sys Myelin repair Ner ve f unc tion hc Epidem are an deliv d p er oli y cy Ge net ics Gene tics iology Neu logy ropatho Infectiou s triggers ks ic MS se ng disea Measuri imaging d n a y activit no lo Risk for pro factors gressio n Pedia tr Tis Tis su b sue eb s ank gy E e pid mi olo gy an Reh abil Sy m o pt Health care delivery and policy m m an mu itat ag Im em ion en t INSIDE 04 THIS ISSUE exciting time for ms researchers 14 matriarch volunteer inspires family 18 chapter scholarship winners 25 not your typical summer job 2 INSIDE THIS ISSUE MS Now Campaign......................... 3 Exciting Time for Researchers....... 4-5 Finding Future Researchers........... 6-7 Research on the Road...................... 7 What We Can Learn from Kids.... 8-9 Trotter Program & Annual Meeting... 9 CarePartner Column.......................10 For CarePartners Connections........11 Ask the Professional........................13 Matriarch Inspires Family..........14-15 Funding the Future....................18-19 From Idea to Grant................... 20-21 MS License Plate.............................21 About CCSVI................................ 22 Clinical Trial Participants Key....... 24 Not Your Typical Summer Job........25 Family Weekend-Touch of Nature... 26 Converting My Walker.................. 27 Talk MS Groups....................... 28-29 Therapeutic Recreation.............. 30-32 Chapter Calendar........................... 34 Deliver A Smile.............................. 34 Program Registration......................35 Midwest Teleconference Series....... 36 Wellness Network.......................... 36 MS connection: fall 2012 Letter from the president We've come a long way since I started with the Chapter 19 years ago when there were exactly ZERO treatments for people living with MS. Now we have eight FDA-approved disease-modifying drugs, including the first oral drug. But it is not enough. We are putting our collective foot down and declaring this instant the time to take action. Now we have to move forward with the mindset that when it comes to a world free of MS, enough is not enough. Only all is enough. We have reached the point where individual efforts can be made exponentially stronger through support and collaboration. Now we stand together as a National Society to raise $250 million to fuel MS research. We will be everywhere at once with a focus on all the most promising opportunities. One path unexplored is one too many left behind. We will stop the progression of MS and restore everything people have lost. Anything less is not far enough. And now, we will end MS forever, so that every mother, father, son and daughter is safe in the future. It will be an MS research revolution. This is our chance to take down MS once and for all, so no opportunity will be wasted and no stone will be left unturned. Because even enough doesn't cut it. We have to do it all. We have to do it together. And we have to do it now. Please enjoy this issue of the MS Connection on research and do something about MS Research -- tell someone about the MS NOW campaign, make a donation, sign up for a 2013 fundraising event, educate yourself at the John L. Trotter program in October. Sincerely, Phyllis Robsham, Chapter President gatewaymssociety.org | 1-800-344-4867 3 Aaron, diagnosed in 1995 Together, we're making a bold commitment to do more now. l l l More money to fuel MS research More research into progressive disease More scientists conducting MS research We share this commitment with you; it's reflected in the Society's 5-year strategic plan -- our strategic response to multiple sclerosis: 2011�2015 --and in our $250 million fundraising goal. our goal: We are a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever. Here's how we will get there Better understand the scientific mechanisms that lead to disease progression and accelerate the development of new therapies. Pursue new avenues to discover how nerve cells are damaged and potentially repaired. Pursue new rehabilitation techniques and symptomatic treatments to restore neurological function and enhance quality of life. Identify risk and triggering factors that cause MS, and understand the biological interactions that lead to its development so that MS can be prevented. Expand and strengthen the quantity and quality of MS research worldwide to accelerate new discoveries and treatments. Your financial contributions support research progress in many areas -- in fact, the Society's comprehensive approach to MS research is the only strategy that will deliver solutions for everyone with MS. AJ, diagnosed in 2000 4 research Dr. Anne Cross has been involved in the field of multiple sclerosis research for nearly 30 years and has seen plenty of changes in the field. When she started there were no treatments for multiple sclerosis. She also remembers being on committees reviewing research grants and having money to spend on research, but not enough worthwhile and relevant projects. MS connection: fall 2012 exciting time for ms researchers "The new drugs will be helpful for people who need them and they may tell us something new about the course of the disease itself." "If we think the idea is good but the project needs a little tweaking, we make a lot of constructive criticism," Cross said. "I really like the MS Society's way of reviewing. The committee will make suggestions and say please send it back in." Once the RPAC has all the recommended projects it has to determine which ones to fund. "It used to be when I was on the committees in the 90s, we had money to fund the projects that we thought were good," Cross said. "If we got 50 grants we might only say that 15 were good enough to be funded. All of those that were recommended would get funded. Now it's much more frustrating because we don't have the money to fund all the grants that should be recommended." how projects are reviewed Cross, a Professor of Neurology and Head of Neuroimmunology at the John L. Trotter MS Center at Washington University in St. Louis, serves on and will soon be the chair of the National MS Society's Research Programs Advisory Committee (RPAC). This committee reviews and recommends new research grants for funding. Subcommittees review, critique and rank all the research grants that are worthwhile, ready and relevant to be studied. Grants that aren't quite ready are sent back to the investigator to rework them. Dr. Anne Cross will serve as the chair for the national Ms society's research programs advisory committee that reviews and recommends grants for funding. "We get the rankings from the subcommittees, see how much money there is now, how much money there may be in 6 months and then we have to make some hard decisions," Cross said. "We can't study it all. There are a lot of grants that are worthwhile that don't get funded." gatewaymssociety.org | 1-800-344-4867 5 "i think within 5-10 years we'll have better ways to figure out what to put patients on from the get go." The advanced imaging could also help neurologists better access how patients are reacting to therapies and be able to more effectively prescribe medications. "This will be a much more useful way to look at whether drugs are effective both in testing new drugs in clinical trials and knowing how effective drugs are on individual patients," Cross said. "Now prescribing medications is kind of trial and error. I think within 5-10 years we'll have better ways to figure out what to put patients on from the get go and what would be better for patient A vs. patient B. We'll know more quickly when to switch therapies. I think we'll have a lot more choices of therapies also." new therapies could lead to greater understanding As incoming chair of the RPAC and a top researcher in the field, Cross certainly has her finger of the pulse of MS research. So what excites her? "Some of the new drugs work differently than the ones we have now and so many of them are really fascinating," Cross said. "The new drugs will be helpful for people who need them and they may tell us something new about the course of the disease itself." advanced imaging could make doctors' jobs easier Another area of MS research that excites Cross is advances in imaging which can give doctors a greater understanding of the course of MS in individuals and how individuals respond to different therapies. "I'm very interested in the very detailed imaging and trying to get at the pathology of the disease, but not invasively," Cross said. "Advancement in imaging will be helpful to understand the disease process itself. If we can get ways we can non-invasively understand the disease, how it goes up and down, and what's happening underneath the surface, then that will help us understand different types of MS. Now we just compare different types of MS clinically, which is not optimal. Better imaging will help provide a better understanding of what is going on over time at the cellular and high-resolution level. It's not standard MRIs at all." exciting future Dr. Cross has seen quite a bit in the recent past and she's excited about the future of MS research. "When I started out we had no drugs. A lot of people were severely affected by MS in those days and were just treated with steroids because that's about all we had. Basically we had nothing," Cross said. "Now probably about 75% of newly diagnosed respond pretty well to the drugs we have. We've learned all sorts of things about lesions in the brain matter and about the disease. I think the battle against MS will eventually be won. I hope it's during my lifetime." n 6 research At the John L. Trotter MS Center at Washington University in St. Louis researchers are working for a better future for people living with MS. The center is also training potential future MS researchers like Divya Gupta, a second year medical student at Northeast Ohio Medical University. She is studying under Dr. Anne Cross and Dr. Enrique Alvarez. She was born in India and raised in Dayton, Ohio. She earned her bachelor of science degree at the University of Akron. MS connection: fall 2012 funding future researchers divya gupta, a 20-year-old medical student from ohio, studied under dr. anne cross and dr. enrique alvarez at washington university this summer. learn more about the disease. As I started meeting patients and reading more about the research that has been done with MS, I became more accustomed to the environment." What drew you to neurology? "In my first year of medical school, the most interesting course for me was Brain, Mind and Behavior. It was fascinating to me to learn about the pathways of the central nervous system and how they control every movement of our body. Multiple sclerosis is a disease that affects these pathways in many different ways. Knowing that MS affects a significant portion of the population, I wanted to learn more about the disease and possibly help in making a step forward towards finding a better treatment for it." What was the most interesting thing you've learned ? What has your experience at Washington University been like? "I have had an exhilarating experience here. While the first week here was slightly overwhelming because I didn't know much at all about MS, both Dr. Alvarez and Dr. Cross were welcoming and provided me with adequate resources to "The most intriguing thing I have learned so far is the wide spectrum within MS. Before starting my work at Washington University, I knew MS is a demyelinating disease of the central nervous system, but never imagined the variety of symptoms that can be associated with it. Having been in the clinic only a couple of times I have seen individuals that are both young and old, different races, and both mildly and severely affected." gatewaymssociety.org | 1-800-344-4867 7 research How will this experience help you? "This is allowing me to learn about MS in greater depth than I ever would have sitting in a classroom. Not only am I gaining knowledge about MS, but I will be able to spread the awareness of a fairly common disease among my peers by sharing my summer experience. I also believe this experience has given me a chance to think on my feet and seek knowledge on my own. Performing research in a lab has a different twist to learning than attending lectures and studying for tests. It requires you to be a lot more inquisitive and helps to develop problem solving skills." research on the road columbia, mo september 22, 10 a.m. - Noon Hilton Garden Inn 3300 Vandiver Ave. Columbia, MO 65202 Dr. Mark Tullmann will provide up-to-date information on: �Research and new therapies for MS �New data on disease modifying medication FREE (INCLUDES BRUNCH) Register at gatewaymssociety.org g Chapter Calendar. What does this experience mean to you? "I'm very fortunate to have been given the opportunity to work at such a prestigious university like Washington University. Coming from a smaller medical school, it is interesting to see the differences and similarities present within medical education." Where do you see your career going? "While my experience so far at Washington University has reinforced my interest in neurology, I know I have still have a lot to explore and learn. One day, I would ideally like to practice as a neurologist but would still like to keep an open mind as I continue through medical school." n about the speaker Mark Tullmann MD, Neurologist The MS Center for Innovations in MS Care Missouri Baptist Medical Center 8 research ms While much has been learned about multiple sclerosis, several areas, including pediatric MS, need much more exploration. Dr. Emmanuelle Waubant, PhD, Associate Professor of Neurology at the University of California � San Francisco, is currently running a large study aiming at unraveling the triggers of pediatric MS. "We expect this study will provide key information on factors that trigger MS, not only in children but also in adults," Dr. MS connection: fall 2012 making advances in pediatric research "We expect that this study will provide key information on factors that trigger ms, not only in children but also in adults." Waubant said. "This study is leveraging the fact that it is easier to study risk factors closer to the time of exposure like in children as opposed to in adults. We expect it will provide many precious pieces of information on risk factors for MS in general, and maybe help develop new treatments or preventative strategies." by studying pediatric ms, researchers are hoping to also learn more about ms in adults. You can learn more about this topic at the JOhn L. Trotter research program in october. gatewaymssociety.org | 1-800-344-4867 9 chance of disability." Waubant's team learned that MRIs of patients under 11 show larger and more poorly defined MS scars compared to adults and that MS scars in young patients often go away within a few months, which is very rare in adults. They also observed that spinal fluid of young patients can show more inflammation than in adults. Younger patients can also have problems thinking and are lethargic with the first MS attack. "Now that these distinct features in younger patients have been identified, and that widespread education is delivered to care providers, accurate diagnosis in children with MS is made easier and early treatment can better prevent disability onset." n The Regional Pediatric MS Center at UCF is a Center of Excellence that was initiated in 2006, along with five other centers, through a grant from the National MS Society. The goal was to provide multidisciplinary clinical services to families affected by MS. Since then, the pediatric MS Network has seen over 1,500 pediatric patients. "Thanks to this multidisciplinary approach to pediatric MS, the pediatric MS Network team has unraveled key features of pediatric MS such as distinct characteristics of the disease on the MRI and spinal fluid of patients younger than 11, when the disease looks different and challenges doctors," Dr. Waubant said. "Until this groundbreaking work, these atypical characteristics at disease onset resulted in delayed diagnosis and care, and thus, higher john l. trotter Research program AND ANNUAL MEETING "what kids with ms are teaching us." saturday, october 6 10 a.m. Hilton st. louis frontenac Please join us as Dr. Emmanuelle Waubant discusses advances in MS research and how studying children with MS could help us understand the disease and develop new treatments. "We expect by studying children with MS, it will provide many precious pieces of information on risk factors for MS in general, and maybe help develop new treatments or preventative strategies." - Emmanuelle Waubandt, MD, PhD, FAAN John L. Trotter Keynote Speaker Associate Professor of Neurology, University of California San Francisco register now 800 344 4867 or gatewaymssociety.org JOIN US IN PERSON FOR JUST $10 (INCLUDES BRUNCH) OR VIA TELECONFERENCE OR LIVE STREAM FOR FREE 10 carepartner programs MS connection: fall 2012 ABOUT CAREPARTNERS "Love begins by taking care of the closest ones - the ones at home." Mother Teresa Carepartners provide everyday assistance their loved ones with MS depend on. A carepartner can be anyone: a spouse, partner, friend, neighbor, even parent or child. Regardless of the relationship, this person has agreed to take on a very important role in their loved one's life. Carepartners can help by providing assistance with the day-to-day life happenings, managing the household, and supervising doctor visits and medication. The new relationship built around the battle against MS can create a bond stronger than ever before and can be very rewarding. At the same time, the caregiver must be wary of his or her own health and needs. In addition to carepartners being welcome at most programs for people with MS, the Gateway Area Chapter provides many programs and resources specifically for carepartners and there are many ways to get information and get involved with the various Carepartner groups. The Chapter provides limited services to help carepartners attend programs, including fee waivers for paid programs, and resources for respite care to help support the person with MS while the Carepartner attends a program, runs errands, or simply takes a break. To find out more information on Carepartner programs and resources in your area, call the National MS Society at 800-344-4867. MS together This couples social group provides an informal social opportunity to meet and talk. Events are organized by the couples themselves, including potlucks and ballgames. Expect to actively participate in planning and organizing, as well as having fun! Meets quarterly, location changes but is generally in the St. Louis area. If interested email Joe Salacki at jsalacki2@ gmail.com. Carepartner and family group This group covers a series of topics important to caregivers, for anyone who provides care for a loved one with MS. Meets the first Tuesday in February, May, August and November at 7 p.m. David C. Pratt Cancer Center Mercy Hospital 607 S. New Ballas Rd. St. Louis, MO 63147 Group is facilitated by Karen Tripp, counselor. new caregiver column The MS Connection will now feature an advice column (see next page) specifically for those who care for someone who lives with MS. If you have a question for our advice columnist, Karen Tripp, please send it to stacey.sickler@ nmss.org with the subject line CAREGIVER QUESTION or by mail to 1867 Lackland Hill Parkway, St. Louis, MO 63146 ATTN: Stacey. gatewaymssociety.org | 1-800-344-4867 11 tips for caregivers how to prevent caregivers from getting overwhelmed Being a caregiver isn't easy. Actually, it can be stressful, exhausting, infuriating, depressing and it can even make you sick. Statistics show karen tripp caregivers typically have higher marriage and family anxiety, more therapist depression, lower immune systems and a shorter life expectancy than their noncaregiving peers. 1 "to find your core support group, just answer this question: who can ask you, `how are you doing?' and give an honest answer?" simple daily needs and chores, caregivers can better care for loved ones. The third step is to build a core support group. Two or three emotionally supportive people can make a world of difference in the life of a caregiver. These are not the people to help you with a broken car. These are the people who can help you with a tired and sometimes hurting heart. To find your core support group, just answer this question: who can ask you, "How are you doing," and give an honest answer? It's important to talk about your difficulties and seek out caring people to listen. If you do not have the emotional support you need, locate an MS caregiver support group (see pages 26-27). Don't let the needs of the person living with MS overshadow the needs of the caregiver. Acknowledge the stress in your life and reach out for support now, before you become overwhelmed. National Family Caregivers Association. Ed. Sandy Rogers. N.p., n.d. Web. 13 Apr. 2010. www. thefamilycaregiver.org/who_are_family_caregivers/ care_giving_statstics.cfm#7. 1 Caregivers need to take care of themselves as they do their loved ones. On a good day this is difficult, other days it seems impossible. After all, how can you take care of yourself, when the needs of someone living with MS are so much greater? Just remember that being physically and emotionally healthy as a caregiver is an important gift for a loved one living with MS. The first step is acknowledging stress before the body begins to show stress-related symptoms and to ask for help. The second step is to accept help. If people say "Is there anything I can do?", the correct answer is "YES!" By letting others assist with Pa i d A d v e r t i s e m e n t TAKE CONTROL OF YOUR MS RELAPSES Know Your Treatment Options If you're unsatisfied with your current treatment for MS relapses--because it doesn't work well or causes side effects that are hard to manage--you're invited to a presentation created especially for you. You will learn from an MS healthcare professional about a different FDA-approved treatment option and hear a firsthand account of a patient's experience with this treatment. You will also learn: � � � � How to distinguish between relapses and pseudo-relapses About the importance of treating relapses How to talk about relapses with your healthcare provider About the available treatment options for MS relapses Location The Creek Grill and Sports Bar 2000 Phoenix Center Drive Washington, Missouri 63090 Monday, October 15, 2012 6:00 PM 5:30 PM Max Benzaquen, MD Chesterfield, Missouri Date Time Check-in Presented by Please register by Sunday, October 14, 2012. To register for this program, call 877-219-0410, or go to www.msrelapseprogram.com, and refer to Program #2449. A caregiver or friend is welcome to accompany you. �2012 Questcor Pharmaceuticals, Inc. PM-542-02 04/12 Pa i d A d v e r t i s e m e n t gatewaymssociety.org | 1-800-344-4867 13 ask the professional Why aren't there treatments for progressive MS? Well, it's not for a lack of trying. We've used all of the FDA-approved drugs that are indicated for relapsing MS in progressive MS and so far they haven't worked, although some of those trials are still ongoing. But I think the real issue is that progressive MS may be different than relapsing MS. to turn these cells on and get them to turn into myelinmaking cells, we could actually repair the brain in progressive MS. By that I mean that in relapsing MS we know there's inflammation, and we know how to target inflammation. But in progressive MS there's likely a different process going on. The nerves themselves become unhappy from the loss of myelin, and we need to figure out how to rescue those nerves and keep them happier and target remyelination. Stopping MS progression is a challenging problem but we're looking at how nerve cells survive and the signals that are required to keep them alive. First, we're screening drugs, compounds that may be already available in a drug that's already indicated by the FDA for one disease. Second, we're also trying to find out how we can repair the tissue, through remyelination, and really are just starting to get ideas about how to do that. We do know that within all of our brains there are cells that have the capacity to turn into myelin-making cells. If we can figure out how The idea with the Collaborative MS Professor of Neurology Research Center Director award presented Johns Hopkins MS Center by the National MS Society is we tap into expertise of scientists from other areas of medical research. We're working with a biologist, Dr. Dwight Bergles, who specializes in how myelination happens in the first place. It's a bit like dialing back the clock to make our bodies think we're children again and we need to myelinate. And through understanding how it happens normally, we can perhaps trigger that to happen in patients with MS. We're also working with Dr. Jeff Rothstein who is working on ALS, or Lou Gehrig's disease, another disease where there's brain degeneration. It's very important that we understand lessons that have been learned from that disease and apply them to MS. It is an exciting time, and I think this kind of collaboration is really critical to making progress and moving forward quickly. n dr. Peter calabresi 14 volunteer column MS connection: fall 2012 matriarch inspires family to help create a world free of ms simone jacob Bike MS volunteer Challenge Walk MS participant When our song, The Wind Beneath My Wings, plays I always think of Mom. An angel in the true sense and the wind beneath my wings, my mother, Judy Drury, was a friend to everyone, a stranger to none. She was a nurse, red hat queen, wife, mother, grandmother, friend, volunteer, and the most caring individual I have ever met. Everyone who came in contact with her would tell you their heart had been touched forever. She lived with MS that attacked with vengeance. She was plagued with MS for 14� years, but if you met her you wouldn't know it. Mom rode her scooter like a 20-year-old race car driver, always with a smile, always willing to help anyone who needed it. Her disease began with a numb toe and then progressed, attacking her legs and her eyesight, but never her will to live. We also have an uncle and a family friend with MS so we know personally how devastating it can be, not only physically, but emotionally. Watching our mother, uncle, and family friend suffer the effects of this devastating Simone jacob (left), her brother John drury (top), mother Judy Drury (right) and daughter Morgan have been big parts of Bike ms. Judy Drury was a fixture at the medical tents at Bike MS. gatewaymssociety.org | 1-800-344-4867 15 Mom as the rest stop nurse for two days brought tears to my eyes. I watched her interact with riders and other volunteers knowing that no one knew what pain she was enduring as she sat, stood, knelt, iced, bandaged, offered words of advice and comfort to each and every rider she came in contact with. We pray that the funds raised and the awareness that MS events provide, will someday offer a cure for this crippling disease. I know this year has been, and will continue to be, challenging for my brother as Mom was his partner for five years, volunteering and supporting his efforts every step of the way. This year, our angel will be watching over us with love and adoration from above. We love and honor you Mom, you are the wind beneath our wings, this year and every year... this ride is for you! disease motivated us, as a family, to volunteer at events to support the research of MS. We have walked and ridden bikes to support these efforts. Sometimes we participated by fundraising. I raised over $2,500 to participate in Challenge Walk MS which was the hardest, yet most rewarding, event I have ever participated in. Raising the money, the Circle of Strength, sleeping on the floor of a college gymnasium, the blisters, the camaraderie among people from all walks of life, are only a few memories I have of those three exhausting days. Mom volunteered as a nurse at Bike MS the past 5 years as my brother, John Drury, fundraised, trained, and battled both back and knee injuries to ride every single mile that he could. He did this, not only for her, but for every individual with MS. John devotes months each year to both training and fundraising for Bike MS and rides with Kaldi's Coffee. He has raised more than $7,000. He has volunteered by setting up tent city, parking, and riding over 800 miles for Bike MS. Amie, my sister-in-law, has volunteered as rest stop support, cheerleader, and breakfast server to hundreds of hungry riders. Morgan, our daughter, Jake, my husband, and our friends Sarah and Penny cheered and served Gatorade to riders at both of our rest stops. Last year, my husband, daughter, sister-in-law, and close family friends found volunteering with Mom to be very rewarding. Watching just a reminder...medicare open enrollement begins oct. 7 The Medicare Open Enrollment Period this year is October 7 - December 15. During the Open Enrollment period, current or newly eligible Medicare beneficiaries, including people with Original Medicare, can review current health and prescription drug coverage, compare health and drug plan options available in their area, and choose coverage that best meets their needs. For more information go to www.medicare.gov or call 1-800-MEDICARE (1-800-633-4227). Pa i d A d v e r t i s e m e n t TAKE CONTROL OF YOUR MS RELAPSES Know Your Treatment Options If you're unsatisfied with your current treatment for MS relapses--because it doesn't work well or causes side effects that are hard to manage--you're invited to a presentation created especially for you. You will learn from an MS healthcare professional about a different FDA-approved treatment option and hear a firsthand account of a patient's experience with this treatment. You will also learn: � � � � How to distinguish between relapses and pseudo-relapses About the importance of treating relapses How to talk about relapses with your healthcare provider About the available treatment options for MS relapses Location Bella Italia Ristorante 20 North Spanish Street Cape Girardeau, Missouri 63701 Wednesday, October 17, 2012 6:00 PM 5:30 PM Lori Guyton, MD, MHS Herrin, Illinois Date Time Check-in Presented by Please register by Tuesday, October 16, 2012. To register for this program, call 877-219-0410, or go to www.msrelapseprogram.com, and refer to Program #2450. A caregiver or friend is welcome to accompany you. �2012 Questcor Pharmaceuticals, Inc. PM-542-02 04/12 Pa i d A d v e r t i s e m e n t Pa i d A d v e r t i s e m e n t You're invited to join us at a Novartis MS Education Link Event Hear a medical specialist share information about multiple sclerosis (MS), learn about a prescription treatment option, and connect with people in your community living with MS. Featured Specialist: Myles Goble, MD Barbara Green, MD Sept. 18 at 6:00pm 44 Stone Public House 3910 Peachtree Dr. Columbia, MO Sept. 19 at 6:00pm Matt's Steakhouse 12200 Dillon Outer Dr. Rolla, MO Featured Specialist: Barbara Green, MD Florian Thomas, MD Sept. 30 at 11:30am Trattoria Branica 10411 Clayton Rd. St. Louis, MO Oct. 2 at 6:00pm Pirrones Pizza 1775 Washington St. Florissant, MO Tell or bring a friend! Accessible to people with disabilities. Light meal served. Parking will be validated. Space is limited. Please RSVP by calling 1-800-973-0362 Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 � 2012 Novartis 4/12 T-XMG-1137413 Pa i d A d v e r t i s e m e n t 18 funding the future MS shouldn't stand in the way of an education. This is why the National MS Society's scholarship program exists -- to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The Society established its scholarship program in 2003 and the program continues to grow both in terms of support and scholarships awarded. In its first year of operation the program awarded 36 scholarships for a total of $68,000; in 2012 over $1 million was awarded to 646 scholars. Support for the scholarship program comes from foundations, chapter donors, our own employee giving program and other sources. MS connection: fall 2012 chapter awards $41,000 in Scholarships This year the Gateway Area Chapter awarded more than $41,000 to 21 new college students including the Society's 2012 Presidential Scholar, Caterina Fedyk. Each year, one student is awarded this four-year scholarship. The Chapter also gave renewal scholarships to 9 students continuing their secondary education. Highly qualified high-school seniors who have been diagnosed with MS or who have a parent with MS are eligible for the scholarship program. Awards range from $1,000�$3,000 and a small number of four-year awards are offered. Applications for 2013 scholarships will be accepted (online only) between October 1, 2012, and January 15, 2013. For more info, visit nationalMSsociety.org/scholarship or call us at 1-800-344-4867. presidential scholar thinks outside the box Thanks to her mom's MS, Caterina Fedyk, the Society's 2012 Presidential Scholar, learned early on how to think outside the box--or what she calls the "sandbox." "Since my mom couldn't play in the backyard, I was the only kid with a sandbox on the deck," she says. "But she was there, helping me build sandcastles, and that was all that mattered." As her mom transitioned from a cane, to a walker, to a wheelchair, both of them learned how to adjust--creatively. Caterina's responsibilities at home increased, but she and her mom would find ways to make them fun, playing "waitress" for meals, "housekeeper" for cleaning, "hair salon" and "makeup artist at the theater" for grooming--"My mom certainly had unique appearances at family events!" Caterina recalls. When her mother eventually had to spend more time in bed, they would lie there together, "watching stars on the ceiling from my planetarium set." Caterina plans to use her scholarship to study photojournalism at Ball State University in Muncie, Ind. There, she'll put her MS-spurred problemsolving abilities to good use, learning "to photograph social injustices and document efforts to resolve these issues." caterina fedyk won the the National MS society presidential top scholar award. gatewaymssociety.org | 1-800-344-4867 19 Fulton, MO University of Missouri, Columbia Casey Baumgartner Jackson, MO Murray State University Megan Bradshaw Arnold, MO Missouri University of Science & Tech Shelby Carpenter Jenna Chwascinski Washington, MO East Central College Licking, Missouri Southwest Baptist University Katelyn Cook Saint Peters, MO Truman State University Nicole Draper Kirksville, Missouri Missouri State University Ryan Gross Hannibal, MO Saint Louis University Kane Laks Macon, Missouri Missouri State University Emma McDowell Savannah McMillan Schaefer Glasgow, MO Columbia College Maryland Heights, MO University of Central Missouri Elizabeth Miller Macon, MO Hannibal-LaGrange College Kaleb Mosley Carbondale, IL University of Washington Siri Rigsby Rolla, MO Savannah College of Art and Design Olivia Runyon Litchfield, IL Southern Illinois U. at Edwardsville Paige Simmons Fulton, MO Linn State Technical College Andrew Snethen Katherine Thomas Jefferson City, MO Evangel University Blackwell, MO University of Missouri-Columbia Krystal Van Houten Benton, IL Rend Lake College Whitney Webb Fulton, MO Northern Michigan University Lola Weiss 20 research MS connection: fall 2012 Say you are a researcher at a major university in the U.S. In the shower one morning, you get an exciting new idea about what might be happening in MS, and now you want to test this new idea as soon as possible. What now? First you will probably want to check published papers to make sure your idea or research question hasn't already been resolved by other researchers. This is made pretty easy with the help of the federal government's "PubMed," a free-access, online database where you can search on topics and authors. Then you will need to run some preliminary experiments to make sure you are on the right track. You might be able to shift some of your existing grant support to run one or two preliminary experiments, but maybe not. One option is to apply to the National MS Society for a small pilot research grant. This program is designed to help researchers gather evidence on novel ideas, and build a case for applying for larger-scale research funding to propel the idea forward. Is the idea holding up? Then it's time to apply for a research grant. The usual sources are the National Institutes of Health and the National MS Society. The Society receives some 400 or more proposals every year from researchers who Getting research funding: from idea to grant the society receives some 400 or more proposals every year from researchers who hope to explore particular aspects of MS. hope to explore particular aspects of multiple sclerosis. Passing Muster Research proposals are reviewed by panels of volunteer experts -- called "peer reviewers" -- who meet in person or by conference call to evaluate the research proposals. These panels include some 90 leading scientists, physicians and other professionals from virtually every field related to MS, who volunteer thousands of hours each year. Proposals are evaluated for their scientific merit, their relevance to MS and Society research priorities, the novelty of their ideas, the experience and productivity of the applicants, their collaborators, and their institutional environment and resources. The proposals are ranked in order of priority to be recommended for funding. The senior oversight committee (Research Programs gatewaymssociety.org | 1-800-344-4867 21 advocacy you're in the driver's seat what this means n Every The Missouri General Assembly has approved the MS Awareness speciality license plate! Help spread MS awareness and show others that you support the National MS Society by purchasing an MS Missouri license plate! Apply for your license plates now to help us reach our goal. plate purchased = $25 directly to the NMSS. awareness about MS. Advisory Committee) reviews the results of the other committees' recommendations, and also helps to develop policy and set priorities for the research program. Final recommendations are made to the President and CEO for approval. Projections of Society income and research programs expenditures dictate the number of proposals that can be committed for funding. Congratulations, your research proposal was favorably reviewed! But even if it wasn't, you would receive written comments and suggestions on how to improve your research proposal to enhance your chances of being funded in the future. n Increased what you can do n We need 200 applicants to start production so apply for your license plate today! n Go to gatewaymssociety.org g Advocate g MO License Plate and fill out the application. For a list of peer reviewers, go to http:// www.nationalmssociety.org/for-professionals/researchers/scientific-peer-reviewers/ index.aspx . mov4ms 22 research CCSVI, or chronic cerebrospinal venous insufficiency, has been the subject of scrutiny ever since Dr. Paolo Zamboni first put forth the theory that it could be connected to nervous system damage in people with MS. There appears to be a split amongst the scientific and medical community as to how much effect CCSVI really has on MS patients. MS connection: fall 2012 Society delves deeper into CCsvi to find a treatment. For example, scientists hope to determine how frequently CCSVI occurs in MS, and how often it occurs in people who do not have MS. The studies are currently in the beginning stages. They are expected to take two years, though there are no specific deadlines set. Most studies have recently earned approval and are in the recruitment stage. The MS Society has no role in the selection of patients for the studies, but it will post any openings at www. nationalmssociety.org/ccsvi. The trials range in both subject matter and patient type. One is looking into potential genetic connections, while another is investigating CCSVI in young patients with MS. Dr. Aaron Field, the lead researcher for one of the studies, points out the importance of this diversity. "Currently, all the evidence for this theory has come from just one research group," Dr. Field said. "It is now critical for other investigators, working independently, to confirm or refute this evidence." All research teams are required to conduct six month updates on their progress. If you are interested in learning more about any of these trials, or following their progress, please visit www.nationalmssociety.org/ccsvi. n By 2010 more studies had been conducted on the topic, all with varying results. Some pointed to a potential connection, while others said there was no correlation between the two conditions whatsoever. These wideranging outcomes began raising questions and concerns amongst the MS community, so the National MS Society decided to take steps to better understand CCSVI. The National MS Society joined forces with the MS Society of Canada to provide over $2.4 million worth of funding for seven different studies in order to confirm the phenomenon originally described by Dr. Zamboni and to resolve the question as to whether CCSVI is a cause of MS or related to MS in some other manner. Dr. Zamboni requested more research into a treatment for CCSVI, which he believes could be treated through an endovascular surgical procedure, which involves inserting a tiny balloon or stent into blocked veins in order to improve the flow of blood out of the brain and spinal cord. However, these studies are designed to be the first few steps into understanding CCSVI and its possible connection to MS, not Pa i d A d v e r t i s e m e n t TAKE CONTROL OF YOUR MS RELAPSES Know Your Treatment Options If you're unsatisfied with your current treatment for MS relapses--because it doesn't work well or causes side effects that are hard to manage--you're invited to a presentation created especially for you. You will learn from an MS healthcare professional about a different FDA-approved treatment option and hear a firsthand account of a patient's experience with this treatment. You will also learn: � � � � How to distinguish between relapses and pseudo-relapses About the importance of treating relapses How to talk about relapses with your healthcare provider About the available treatment options for MS relapses Location Agostino's Italian Restaurant 130 Ludwig Drive Fairview Heights, Illinois 62208 Thursday, November 15, 2012 6:00 PM 5:30 PM Lori Guyton, MD, MHS Herrin, Illinois Date Time Check-in Presented by Please register by Wednesday, November 14, 2012. To register for this program, call 877-219-0410, or go to www.msrelapseprogram.com, and refer to Program #2451. A caregiver or friend is welcome to accompany you. �2012 Questcor Pharmaceuticals, Inc. PM-542-02 04/12 Pa i d A d v e r t i s e m e n t 24 research People with MS want to do all they can to create a world free of MS � even if it will only help in the future. That's one of the main reasons people will get involved in clinical trials. "I just wanted to help in any way that I could," said Gail Love who was diagnosed with MS in 2003. "It was very important to me to be a part of it." Chet Bunnell has been part of three clinical trials. "I want to do all I can to end this horrible disease and to make life easier for those afflicted," Chet said. "I feel honored and privileged that I have been able to be involved in MS research. More than anything I want to end MS." Gail took part in a trial studying the affects of ampyra on optic neuritis and had to travel about 2 hours once a month for three months for the study. "It made for some long days," Gail said. "I left home at 6 in the morning and got home at 8, but I would definitely do another trial." While Gail had to travel and take pills daily for three months, Chet's was very different as he didn't have to travel and it wasn't studying a new drug. He is part of the "Take Charge of My MS: Telephone Intervention Study." It involved using clinical psychological counseling MS connection: fall 2012 trial participants eye world free of MS over the phone to deal with pain, fatigue and depression. "The major part of the study was a series of eight weeks of telephone discussions, conducted by clinical psychologists, of materials in the workbook that they provided," Chet said. "Each week's call would start with a discussion of and my reaction to the additional reading. Telephone surveys by either a staff member or a clinical psychologist were conducted before, during and after the eight week period in order to assess my feelings and effectiveness of the information provided." Gail didn't know if she was going to be on ampyra or a placebo, but after noticing improved reading ability, she definitely thinks she was on the drug. "I knew I had a 50/50 chance to be on the drug," Gail said. "I could tell on my second visit that I was on the good stuff. My doctor asked me if I thought I was on the drug and I said yes and he said I think you are on it also." Chet learned quite a bit from his experience, but one aspect truly stands out. "The biggest lesson I learned was that it is my body, my MS, and there are things I can do to control my pain, fatigue and depression," Chet said. "I need to take charge of my MS." n gatewaymssociety.org | 1-800-344-4867 25 and Jeffrey Ko on MS specific-T cells testing for genes by running PCRs (polymerase chain reactions) on mouse tissue cultures, where genespecific DNA is first amplified and then run on a gel through an electric current. According to Patrick, these PCR tests take a couple of hours each to run. He reports that he "learned a lot and was excited that he was able to tie in learning from his biology class the prior year on moving chemicals, liquids and DNA." Patrick is not sure what the future holds for him but he is confident that it will be something in a scientific or technical field. "It was a true delight to have Patrick working in my laboratory," Dr Hawiger said. "Patrick is a bright student, keen on learning biology and interested in finding future solutions to current problems in medicine. The purpose of my research is to gain a better understanding of how immune T cells mistake the nerve fiber coating called myelin as a foreign tissue to be destroyed. We identified several molecules that can re-program the functions of myelin � specific T cells and we are now examining them using genetically modified animal models. Since the molecules we are studying share a close biological similarity between humans and mice, we expect that the results we gain from our studies could be later translated into patients." n board of trustees Sixteen-year old Parkway Central High junior Patrick Cannon has ridden in Bike MS since he was 9 with his father, Bob Cannon, group president at BJC and current Chair of the Gateway Area Chapter Board of Trustees. While Patrick rode again this September, this summer he extended his efforts toward a world free of MS in quite a different way. Always interested in science, Patrick was looking for volunteer experience and through Daniel Hawiger, M.D., Ph.D. he found an opportunity that few will be offered at his age. Dr. Hawiger is an Assistant Professor in Molecular Microbiology & Immunology at Saint Louis University School of Medicine. Since September of 2010, Dr. Hawiger has been working on an MS Society-funded project at Saint Louis University entitled "The novel RhoGAP/Hop/Net tolerance-inducing pathway in myelin specific T cells", exploring factors that contribute to the repeated immune attacks in MS in search of opportunities for interfering with these attacks to stop MS. not your typical summer job After several e-mails back and forth, Dr. Hawiger interviewed Patrick and hired him as a volunteer to work in the lab during the summer. After an extensive tour of the lab and training on some of the equipment, Patrick worked closely with Dr. Hawiger's senior research assistant, Cindy Gross and with graduate students Andrew Jones 26 family programming MS connection: fall 2012 touch of nature october 12-14, Makanda, IL 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 in Makanda, just outside of Carbondale, Ill., Touch of Nature offers a secluded and accessible retreat. Weekend activities include: �Accessible pontoon boat rides �Accessible hayrides �Arts & Crafts for all ages �Campfire and s'mores �Accessible horseback and pony rides �Owl prowling and catch and release fishing �`Kids Only' adventure activities and Halloween fun �MS education sessions and activities $80/per person Registration Deadline: October 1 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 are available for this program and/or transportation. Please have registration form to request a waiver to the Chapter by September 26. Kids 5 and younger are free. Registration includes meals, activities and lodging. gatewaymssociety.org | 1-800-344-4867 27 living with ms converting a walker to a sweet ride Walkers are soooo not cool. That was my first thought when I realized that just using my cane to help me get around wasn't cutting it anymore. Then I had another onslaught of thoughts: I'm only 37 years old and I have to use a walker; people are going to stare at me like I'm some kind of weirdo; I actually have to acknowledge that my MS has gotten a lot worse. And on and on. Never being the kind of person to take my MS lying down, I decided to embrace my new "assistive device." After all, it was going to be my new best friend. I'm an active person. I'm a former Air Force officer, I have my own home-based consulting business, travel pretty often for work, and have two wonderful--and extremely active--young children with my active duty Air Force husband. Having trouble getting around is not an option for me. So I asked myself, "How can I make this new rolling wonder as cool as possible?" Then it hit me: Get it custom airbrushed with flames! When my legs still worked normally, my husband and I both had motorcycles, and we watched a million shows about the beautiful work that airbrush artists could do with them. Some motorcycle frames have parts as thin as those on a walker, so I decided to start asking around and find out if a St. Louis artist wouldn't think my request was too crazy. After a short Google search, I found Darren sylvia longmire, who has lived with MS for 8 years, decided to spruce up her walker with a custom paint job to make it, and her, look and feel cool. Williams at Liquid Illusions, a custom airbrush business in the city that not only does amazing work--he's actually customized a walker before! After a week, my new "ride" was finally ready. I couldn't believe my eyes when I saw it! Rocket-flame orange with ghostly green flames licking up the sides of the legs; the work Darren did was exquisite. There was no way I could escape attention while using it, and I couldn't have been happier! I still hate that my body has gotten to a point where I need a walker. But if something as simple as beautiful artwork can make me look forward to using it rather than dreading it, then it's well worth the trouble and small expense to make it happen. 28 talk ms groups MISSOURI Camdenton Cape Girardeau 3rd Wednesday Camden County Library 4:30 p.m. 99 Rodeo Road, Camdenton, MO 65020 3rd Saturday 10 a.m. MS connection: fall 2012 Talk MS Groups bring together people who share a common life experience for support, education, and mutual aid. They are led by trained volunteers who also have a connection to MS. Christy Bays, cell (573) 480-7932 email@example.com Sharon (573) 332-8148 Rebecca Dykhouse, LSW (573) 817-4697, firstname.lastname@example.org Marlene (636) 464-2533 Sharon email@example.com Rebekah Walters (573) 464-2433 firstname.lastname@example.org Lynelle David (660) 833-3175 Debby (573) 267-3365 email@example.com firstname.lastname@example.org Jim (314) 602-4578 Anne (636) 359-6037 St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 Rusk Rehabilitation Center 3rd Wednesday Columbia 315 Business Loop 70 West 6 p.m. Columbia, MO 65203 Disability Resource Association Crystal City/ 2nd Tuesday 420B S. Truman Bl. Festus 1 p.m. Crystal City, MO 63019 1st Monday Coca-Cola Bottling, Meeting Room Jefferson City 6 p.m. 605 Washington, Jefferson City, MO 65109 2nd Saturday Little Dixie Regional Libraries Moberly 10:30 a.m. 111 North 4th Street, Moberly, MO 65270 Ralls County Health Department Building 2nd Tuesday 405 W. 1st Street New London 7 p.m. New London, MO 63459 Oct. 14, 2 p.m. Conference Room A/B Barnes-Jewish O'Fallon Jan. 13, 2 p.m. Hospital, St. Peters, MO 63376 3rd Sunday Hardee's Restaurant, 501 Mid Rivers Mall St. Charles 3 p.m. Dr., St. Peters, MO 63376 3rd Monday St. Peter's United Church of Christ, Washington 6 p.m. 20 East 5th St., Washington, MO 63090 West Plains 3rd Wednesday Ozark Medical Ctr. Shaw Medical Bldg. 2nd Sally (417) 469-4842 5 p.m. Fl. 909 Kentucky St., West Plains, MO 65775 3rd Wednesday Weber Road Library 7 p.m. 4444 Weber Rd, St. Louis, MO 63123 1st Saturday 10 a.m. Linda (314) 544-5623 ST. LOUIS METRO Affton Generation OptiMiStic for people in their 20s, 30s & 40s West County Prayer & Health NMSS Office Gateway Area Chapter Michelle (636) 447-5407 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Rose Marie email@example.com 4th Wednesday Sachs Library 16400 Burkhardt Place 6:30-8 p.m. Chesterfield, MO 63017 gatewaymssociety.org | 1-800-344-4867 29 Lisa (618) 258-0615 Amy (618) 235-4226 Tony (618) 302-1333 firstname.lastname@example.org Meredith (217) 556-4418 Diane (618) 235-8823 Earhart500@aol.com Robert (618) 983-0321 talk ms groups ILLINOIS Alton/River Bend Belleville/ O'Fallon Central Illinois S'myelin Gang of Litchfield Metro East Southern Illinois Couples Group 3rd Tuesday 7-9 p.m. 2nd Sunday 2:30 p.m. 4th Monday 7 p.m. 4th Tuesday 6:30 p.m. Oct. 24, 7 p.m. Dec. 19, 7 p.m. 2nd Monday 6 p.m. The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095 First United Methodist Church 504 East Highway 50, O'Fallon, IL 62269 Richland Memorial Hospital 800 East Locust St., Olney IL 62450 Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056 LINC, Inc. #1 Emerald Terrace, Swansea, IL 62226 Heartland Regional-Medical Center Classroom #1, 3333 West DeYoung, Marion, IL 62959 SPECIALIZED GROUPS Varies, contact Varies, contact for information for information NMSS Office Creative Art 3rd Saturday 1867 Lackland Hill Parkway Experience 10 a.m. St. Louis, MO 63146David C. Pratt Cancer Center MS Fun, Nov. 7, 6 p.m. Mercy Hospital Friends & Food Feb. 5, 6 p.m. 607 S. New Ballas Rd. Potluck St. Louis, MO 63147 Veterans Admin. Medical Center Veterans with 2nd Wednesday 1 Jefferson Barracks Dr., St. Louis, MO MS 10 a.m. 63125 1st Tuesday in David C. Pratt Cancer Center CarePartner Feb., May, Aug. Mercy Hospital and Family & Nov. 607 S. New Ballas Rd., St. Louis, MO Group 6 p.m. 63147 email@example.com firstname.lastname@example.org email@example.com Michelle (314) 251-6400 Debbie (636) 579-0264 firstname.lastname@example.org Penny (314) 652-4100 ext. 63274 Stacey (800) 344-4867 email@example.com interested in a kids' or men's group? Please email firstname.lastname@example.org if you're interested in either group. Please include which day/time would work best for you and how frequent you would like the meeting. Also, if you're interested in the men's group, please include whether you would prefer to have it be a face-toface meeting or through a conference call. You can also call 1-800-344-4867 option 2 and ask for Stacey. 30 stay healthy with ms MS connection: fall 2012 Studies show exercise not only improves your overall health and well-being, but also helps manage many MS symptoms. Move forward through exercise and find a program in your community or become an expert in using a healthy lifestyle to help manage MS. The Chapter offers financial assistance for attendance and transportation to therapeutic recreation programs. Financial assistance is available to help you pay for therapeutic recreation classes and memberships. In some cases, assistance with transportation may also be available. To apply, a completed financial assistance application and confirmation of MS diagnosis from your doctor is required. Amount of financial assistance is derived from a sliding scale based on the information from the financial assistance application. Please note the Gateway Area Chapter makes every effort to ensure all facilities listed provide services to meet the needs of people living with MS. Please contact the facility of choice and determine if the facility will meet your desired needs to ensure a rewarding visit. If you think the your facility would like education on MS please contact the Chapter office at 1-800-344-4867 option 1. Applications are accepted year-round, however completed applications will only be approved during January, April, July and October. For more information go to www.gatewaymssociety.org g Stay Healthy with MS. aquatics pilates tai chi Yoga zumba therapeutic recreation sites St. Louis Bridgeton Community Center Carondelet Park Rec Plex Address 4201 Fee Fee Road Bridgeton, MO 63044 930 Holly Hills Ave St. Louis MO 63111 50 Gay Avenue Center of Clayton Clayton , MO 63105 2 Millstone Campus Drive JCC St. Louis, MO 63146 1528 Locust Street Downtown YMCA St. Louis, MO 63103 Dragonfly Health Spa & 1272 A Jungermann Yoga St. Peters, MO 63376 Edward Jones Family 12521 Marine Avenue YMCA St. Louis, MO 63146 Pershall Road Emerson Family YMCA 3390 St. Louis, MO 63135 Jefferson College 1000 Viking Drive Hillsboro, MO 63050 Kirkwood Family 325 N. Taylor YMCA St. Louis, MO 63122 Maryland Heights 2344 McKelvey Road Centre Maryland Heights, MO 63043 Contact 314-739-5599 314-768-9622 314-290-8511 314-432-5700 314-436-4100 636-498-5544 314-439-9622 314-521-1822 Christina 636-789-3000 314-965-9622 314-738-2599 activities offered gatewaymssociety.org | 1-800-344-4867 31 Contact 314-962-9450 314-781-9020 800-344-4867 Linda 314-729-0181 Jeff 636-896-0999 314-644-3100 314-849-9622 636-928-1928 Kathryn 314-238-2000 314-835-6150 636-227-8950 618-343-0067 636-239-5704 314-962-9622 314-746-1500 636-207-3000 636-532-3100 Bruce 314-645-9785 Nancy 314-378-8639 activities offered therapeutic recreation sites Address 1900 Urban Drive Mid-County YMCA St. Louis, MO 63144 Olivette Community 9723 Grandview Drive Center St. Louis, MO 63132 Old Tesson, Suite 220 Mercy Medical Building 12348 St. Louis, MO, 63128 2085 Bluestone Drive Show Me Aquatics St. Charles, MO 63303 South City Family 3150 Sublette Avenue YMCA St. Louis, MO 63139 South County Family 12736 Southfork Road YMCA St. Louis, MO 63128 St. Charles County 3900 Shady Springs Lane YMCA St. Peters, MO 63376 The Cancer Support 1058 Old Des Peres Rd Community St. Louis, MO 63131 Des Peres Road The Lodge in Des Peres 1050 St. Louis, MO 63131 The Pointe at Ballwin 1 Ballwin Commons Circle Commons Ballwin, MO 63021 990 Horan Dr Riverchase Fenton, MO 63026 Washington Four 400 Grand Avenue Rivers Family YMCA Washington, MO 63090 Webster Groves Family 226 East Lockwood Avenue YMCA Webster Groves, MO 63119 Wellbridge Athletic 7620 Forsyth Boulevard Club Clayton , MO 63105 Wellbridge Athletic 998 Woods Mill Road Club Town & Country, MO 63131 West County Family 16464 Burkhardt Pl YMCA Chesterfield, MO 63017 3305 Jamieson Ave. Yoga Saint Louis St. Louis, MO 63139 233 Lamp & Lantern Village Z Power Fitness Town & Country, MO 63017 St. Louis cont. aquatics pilates tai chi Yoga zumba 32 therapeutic recreation sites Address 1701 W. Ash Street Columbia, MO 65203 904 Elm St. Suite 210. Elm Street Yoga Columbia, MO 65201 424 Stadium Boulevard Jefferson City YMCA Jefferson City, MO 65101 1127 Adams Street Mexico Family YMCA Mexico, MO 65265 Pilates & Yoga at Chapel 2010 Chapel Plaza Ct. Suite A Hill Columbia, MO 65203 Illinois Address 1200 Esic Drive Edwardsville YMCA Edwardsville, IL 62025 Jerseyville Wellness 400 Maple Summit Rd Center Jerseyville, IL. 62052 Logan College Road John A. Logan College 700 Carterville, IL 62918 1 Town Center Drive Maryville YMCA Maryville, IL 62062 Mascoutah Senior Center O'Fallon Community YMCA One-O-One Yoga Sukha Yoga Center Southeast Missouri Black River Coliseum Cape Girardeau Municipal Pool PARC Fitness Center Simply Yoga Xtreme Gymnastics Cheer and Dance 227 N. Market Mascoutah, IL 62258 284 North 7 Hills Road O'Fallon, IL 62269 101 S Graham Ave # 1 Carbondale, IL 62901 18 South High Street Belleville, IL 62220 Address 301 South 5th Street Poplar Bluff, MO 63901 1920 Whitener Street Cape Girardeau, MO 63701 2620 N. Westwood Blvd. Poplar Bluff, MO 63901 1504 Preacher Roe #2 West Plains, MO 65775 422 West Pine Street Poplar Bluff, MO 63901 Mid-Missouri Columbia Activity and Rec. Center Contact 573-874-7700 Linda 573-657-2614 573-761-9021 573-581-1540 573-446-0224 Contact 618-656-0436 Jennifer 618-498-6402 Chris 618-985-3741 618-346-5600 618-566-8758 618-628-7701 Sarah 618-457-8186 Sarah 618-236-9642 Contact 573-686-8001 Pat 573-335-4040 Mindy 573-686-5985 Vicki 417-293-1184 Christi 573-785-3780 MS connection: fall 2012 activities offered activities offered activities offered aquatics pilates tai chi Yoga zumba Pa i d A d v e r t i s e m e n t You're invited to join us at a Novartis MS Education Link Event Hear a medical specialist share information about multiple sclerosis (MS), learn about a prescription treatment option, and connect with people in your community living with MS. Featured Specialist: Mary-Kay Fink, RN Barbara Green, MD Oct. 4 at 6:00pm Old Spaghetti Factory 17384 Airport Rd. Chesterfield, MO Oct. 11 at 6:00pm Cowan's Restaurant 114 Elm St. Washington, MO Featured Specialist: Heather Popham, NP Heather Popham, NP Oct. 18 at 6:00pm Bartolino's Osteria 2103 Sulphur Ave. St. Louis, MO Nov. 8 at 6:30pm Spiro's Restaurant 2275 Bluestone Dr. St. Charles, MO Tell or bring a friend! Accessible to people with disabilities. Light meal served. Parking will be validated. Space is limited. Please RSVP by calling 1-800-973-0362 Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 � 2012 Novartis 4/12 T-XMG-1137413 Pa i d A d v e r t i s e m e n t 34 chapter calendar Date Sept. 22 Sept. 27 Oct. 6 Oct. 1214 Oct. 15 Oct. 25 Nov. 12 Nov. 15 Dec. 17 Dec. 27 program/ event Research MS Wellness Network John L. Trotter Research Program & Annual Meeting Family Weekend at Touch of Nature Teleconference Wellness Network Teleconference Wellness Network Teleconference Wellness Network MS connection: fall 2012 Available via Available via live-stream telephone in this area. pg. st. louis illinois southern midSe# mETRO illinois Missouri Missouri 7 P 36 P Program located 9 26 36 36 36 36 36 36 P P What is Deliver a Smile? Deliver a Smile is an opportunity to brighten the day of a person living with MS! In December MS Society staff and volunteers make friendly visits to individuals living with MS and bring a "little something" with them. The Chapter delivers gifts specifically requested by individuals living with MS. Who Qualifies? Sponsor a Smile! Deliver a Smile serves individuals living with MS who are homebound or living in longterm care facilities. These individuals are usually socially isolated and unable to go out without assistance. Most individuals are referred to the program by friends, neighbors and family members. We need your help! Please consider a donation in the form of cash, check, credit card and/or gift cards to these retailers: Walmart, Kohl's, Kmart, Target or Walgreens. Deliver a Smile! We have Deliver a Smile recipients in 90 counties in Missouri and Illinois. We need volunteers like you to help deliver these smiles! To volunteer, contact the Chapter. gatewaymssociety.org | 1-800-344-4867 35 share what you know msconnection.org Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other. Maybe, by connecting all of our knowledge, and hope, and experience, we can gain a new understanding of how to move forward. Share What You Know Find, store and share meaningful updates, posts, videos, articles and other content about the topics you care about most. Connect with people, groups and discussions that relate to the topics that shape your world. Join conversations with others who share your experiences, challenges, and interests, and put the best resources available to work for you, so you can move your life forward in the way that feels right for you. Publication of the National Multiple Sclerosis Society program registration Name__________________________________ Address_________________________________ City/State/Zip___________________________ Home phone____________________________ Work phone_____________________________ E-mail_________________________________ Date of Diagnosis_________________________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to NMSS ( ) Visa ( ) MC ( ) Disc ( ) Am. Ex Card # ______________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 Register online go to www.gatewaymssociety.org, g "Chapter Calendar." [ [ [ [ [ [ [ [ [ [ ]Research MS, Columbia, MO September 22 COST: FREE PROGRAM ]Wellness Network September 27 COST: FREE PROGRAM ]John L. Trotter Research Program & Annual Meeting October 6 COST: $10/person ]Family Weekend, Carbondale, IL October 12-13 COST: $80/person ]Teleconference October 15 COST: FREE PROGRAM ]Wellness Network October 15 COST: FREE PROGRAM ]Teleconference November 12 COST: FREE PROGRAM ]Wellness Network November 15 COST: FREE PROGRAM ]Teleconference December 17 COST: FREE PROGRAM ]Wellness Network December 27 COST: FREE PROGRAM Contact Us at: National MS Society, Gateway Area Chapter 1867 Lackland Hill Parkway, St. Louis, MO 63146 314-781-9020 | 1-800-344-4867 | www.gatewaymssociety. org MS Connection � 2012 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President � Phyllis Robsham Writers � Dr. Peter Calabresi � Joe Cavato � Sylvia Longmire � Kelsey Smith � Kathi Taylor 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. NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 wellness network The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These monthly calls are an opportunity to share ideas and encouragement about exercise and include special guest speakers. Sept. 27, 7-8 p.m. Tai Chi Oct. 25, 7-8 p.m. Movement, Posture & Breathing: The Feldenkrais Method & MS Nov. 15, 7-8 p.m. Dec 27, 7-8 p.m. Eating Right During the Holidays Martial Arts & MS: How to Stay Safe dial. listen. learn. Midwest Teleconference Series Mark your calendars on every second Monday of the month for the Midwest Teleconference Series. Managing Cognitive Changes in MS Midwest Oct. 15, 7-8 p.m. Teleconference Series symptoms Learn strategies for dealing with cognitive from someone who faces these challenges daily. Speaker: Jeffrey Gingold Exercise: Maybe a Pain, But a Lot of Gain Midwest Nov. 12, 7-8 p.m. Teleconference Learn what research tells us Series about the long-term benefits of regular physical activity Speaker: Robert Motl, MD, PhD Don't Quit Your Day Job December 17, 7-8 p.m. Midwest Teleconference Learn what the Americans with Disability Act means Series for you and your workplace Speaker: John Murray, Shareholder, Lindner & Marsack, S.C. The Wellness Network is free and provides resources to a wide variety of people with MS of all abilities. 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.