MS Connection Volume 6, Edition 1 by National Multiple Sclerosis Society, Gateway Area Chapter

GATEWAY AREA CHAPTER

MOVING TOWARD A WORLD FREE OF MS | VOLUME 6 • EDITION 1

Selfless Spirit Moves Us Closer to a World Free of MS From Stuffing Envelopes to Serving on Committees, Volunteers Do It All “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” A Bike MS volunteer congratulates a cyclist at the finish line at the end of last year’s ride in Columbia, MO.

DidYouKnow? The Chapter utilizes more than 1,200 volunteers in a variety of roles from stuffing envelopes and preparing food at events, to advocating for MS in Jefferson City and Springfield and serving on the Board of Trustees

This was the thought of Margaret Mead, an American anthropologist, but the sentiment rings true throughout organizations across the world, as volunteers play an integral role in meeting the mission of organizations such as the National MS Society. It is evident that volunteering is an important part of our society, as President Obama recently launched a nationwide volunteer program earlier this year. “President Obama believes each of us, as Americans, has a responsibility to do what we can for our communities and fellow citizens,” said Josh Earnest, the President’s Inaugural Committee’s communications director. The Chapter has more than 1,200 volunteers who play various roles throughout the year in helping us move closer to a world free of MS. Whether they are stuffing envelopes in the office, making thank you calls to event participants, heading the logistics committee for one of the CONTINUED ON PAGE 2

INSIDE THIS ISSUE

Bike MS: Behind the Scenes Rockin’ For Mom, MS Page 3 Page 12

Chapter Invades Downtown Happenings Page 15 Page 17

FROM PAGE 1

Volunteers help with daily office work to help the Chapter save money and to keep it moving. CONTINUED FROM PAGE 1

fundraising events, advocating for MS or serving on the Board of Trustees, volunteers are the backbone of the Chapter. “Our volunteers give their time, their dedication and their heart,” said Bobbie Appelbaum, volunteer community outreach manager for the Chapter. “We certainly would not accomplish the great things that we do each and every day without them.” Volunteers first come to the Chapter for a variety of reasons, but often end up involved in ways they never imagined. Mike Benack, who grew up in Arnold and now resides in Maryland Heights, gives his time to the Chapter because it is a cause that is close to his heart. “My mom was diagnosed with MS in 1988, so she has lived with MS for over 20 years,” Mike said. Mike has become a regular volunteer at the Chapter’s fundraising events and has recently joined the Young Professionals Group.

If you are employed, volunteering gives you a chance to learn new skills, gain experience in a new field, and meet new people. The Chapter has many volunteer positions that only require a couple of hours per week and can be done from home. If you are retired, volunteering is a great way to stay active, stay connected and to share your experience and talents. We have a large group of retired individuals currently volunteering with us; come in and make a new friend! If you are a recent college graduate or current student, internships are a great way to connect your interests and what you are studying or have studied with the “real world”. Our Chapter has many short-term and long-term internship projects that will give you a chance to gain experience in working for a nonprofit and of course build your resume and networks. If you are currently a job seeker, volunteering while you are also actively job hunting is a great way to stay active in a workplace setting. It gives you a chance to learn new skills, refresh old skills, meet new people, and build your resume and networks. Volunteering is also a great way to reduce stress and increase a positive sense of self. As President Obama says in the volunteer initiative campaign, “America’s greatness was not crafted in skyscrapers alone…but on the ground by those who could see what needed to be done.”

“I am involved with the MS Society because MS affects my family directly and I am hoping with a little hard work, I can help them move closer to better treatments or even a cure,” Mike said. “It just feels nice to be part of something that is making strides to help people.” Benack started his involvement by participating in his first Walk MS event at Arnold Park in 2004. Now, he volunteers at most MS events and has helped coordinate some of the family events. There’s a reason and a place for you to volunteer, no matter what stage of your life you are in. 2 |

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Event volunteers help keep participants moving by staffing rest stops and food tents.

EVENTS

The Bike MS Logistics Committee helps organize every detail of Bike MS from meals and volunteers to bike mechanic support to port-a-potties and rest stops

Bike MS: Behind The Scenes Committee helps make event happen

Senior development coordinator for the Chapter, Randy Adler, works directly with the committee.

“The event would not happen without the efforts of these dedicated volunteers who give hundreds of hours planning Bike If you’ve been to Bike MS, you probably remember seeing a plethora MS,” Randy said. of tents, water jugs, food, support Committee members operate and gear vehicles, safety marshals, more like unpaid staff rather than mechanics, the list goes on and on. volunteers to help make Bike MS After all, it takes 700 volunteers to a success. While working with put on Bike MS for 3,000 cyclists. Randy, they help secure additional volunteers, plan their roles and train But have you ever wondered HOW them. Bike MS seems to come together? The staff certainly doesn’t do it alone. Seeing it all come together and They rely heavily on the dedicated being part of a successful event is Bike MS Logistics Committee. reward enough for Scott Naeger, a committee member since 2003. What is involved in the committee? Committee member Jamie Mealey “I get a sense of accomplishment and sums it up pretty well. satisfaction that is hard to explain,” Scott said. “To be part of something “I compare it to planning a dinner that is so good and meaningful is party at your home,” Jamie said. really fulfilling. I have become friends “Take that time and stress, multiply with committee members, staff, it by 500, and invite your guests to stay the whole weekend. The people volunteers and people struggling involved to make this event possible daily with the disease.” are truly amazing. When I first sat in It’s truly a collaborative effort of a committee meeting four years ago, dedicated and talented volunteers I was in awe. Now I find it enjoyable who each handle their specialty. to see that same expression on the Jamie said the meetings are certainly faces of those who come to their first a lot to take in as the committee plans meeting.” out every detail to keep 3,000 cyclists moving, safe, fed and healthy.

At each meeting the members responsible for each aspect of Bike MS discuss the current status. These aspects include: staffing and setting up rest stops, coordinating more than 50 HAM radio operators, securing medical supplies and professional volunteers, planning transportation of supplies, organizing the more than 30 SAG vehicles and drivers, safety, entertainment, in-kind donations, the route, site set up, and more. The briefings are enough to make your head spin. “After you hear these reports the only thing you can do is sit back in your chair and say ‘WOW,’” Jamie said. Al Guise, another committee member, understands the work that goes into making these events a success but knows it’s worth it. “As a volunteer I’m part of a great cause,” Al said. “The riders are great. The Chapter staff is incredible. Everyone has a smile on their face and a cheerful greeting.’” Becoming involved on a Bike MS Committee is a challenging yet fulfilling way to volunteer for the Chapter. We would like to thank all of our event and programs planning committees for their dedication, expertise and time.

TOLL FREE NUMBER 1 800 344 4867

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PROGRAMS

Committee reaches out to those in need of long-term care

The committee brings together nurses, occupational therapists, social workers and other professionals to examine what can be done for people with MS who need long-term care.

A difficult situation that can be faced by someone with MS is living in a long-term care facility. The Chapter addresses this challenge with the help of some very dedicated and knowledgeable volunteers.

“What’s nice about the committee is we have people from all different settings and disciplines and we’re able to share a lot of ideas,” Pam said. “At this point what we’re trying to do is take a lot of that knowledge The volunteers on the Long-Term Care Committee help and turn it into more focused tools and resources and the Chapter with its goal of improving the quality of try to do whatever we can to remove any obstacles or life of those living with MS in skilled-nursing facilities. barriers to placement in a skilled setting.” “Without the help of this committee we would not be able to reach out to as many long-term care facilities,” said Elke Hansen, director of services at the Chapter. “Our goal is to improve the quality of life for people living with MS in long-term care settings.” Pam Shipman, the vice president of operations of Delmar Gardens, is the committee chair. She points out that people living with MS in these facilities are a unique population mainly because they are younger than most of the residents at long-term care facilities. “I think the committee looks more at a quality of life issue than a quality of care issue,” she said. “It’s tough to be 50 or 60 years old in a setting where the average age of residents is in the 80s or 90s.” One of the committee members, Jody Wagner, RN, PhD, reaches out to long-term care facilities as she conducts training sessions with staff at skill-nursing homes. She explains to them some specifics of caring for someone living with MS as their needs could be far different than other residents. “This is a younger population that has very specialized needs,” Pam said. “It’s been a real obstacle because facilities that are focused on the geriatric population don’t always understand the needs of someone in their 50s who also has a lot of functional limitation.” 4

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The committee’s job is never finished, as it is an ongoing process of raising awareness of the needs of people with MS in these situations. “The work of the committee is important because it improves the education and the quality of care allaround,” Pam said. “It provides a more meaningful setting for those individuals who do reside in a skilled setting because there are no other resources available. I really think it helps improve those outcomes and really makes the relationship between the patient and the facility so much better.”

Call to Action Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’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 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

ADVOCACY

Speaking UP

Advocacy Volunteers Provide Voice for Those Living with MS Amy Thomas may have felt a bit intimidated when she climbed the stairs at the Illinois state capitol building in Springfield during Illinois Advocacy Day in March, but that feeling didn’t last long. “I was a little apprehensive because I was going to meet a senator,” said Amy who was diagnosed with MS in 2006. “We began educating him about MS, why it was personally important and how he could influence/enact policy change, and I realized he was a normal person with a family and personal issues and that there was nothing to be nervous about.”

Alert.” Action Alert is an e-mail program that keeps members updated on relevant public policy matters. Periodically, we ask people to contact their elected officials in support of a particular policy position. There are many great ways to become an MS Advocate like: serving on local boards or committees dealing with health and disability, hosting MS Policy Forums with elected officials in your area or visiting elected officials in Jefferson City or Springfield.

MS Advocates are volunteers dedicated to raising MS awareness and keeping an eye on state and federal initiatives that can help people living with MS.

Legislative Ambassador and member of the advocacy committee “MS-CAN,” Stephen Kinstler, didn’t really consider himself the advocacy type.

Janet Gillow, the advocacy senior manager of the Chapter and staff liaison to Missouri MS Advocates, certainly appreciates these volunteers.

“I have never thought of myself as an advocate,” Stephen said. “Growing up I was instilled with a sense of duty to help others and advocacy has grown from there. I get a great deal of personal satisfaction from helping others and I know that I benefit most of all. I just want to leave this world knowing that I helped make a small part of it a little bit better.”

“MS Advocates are absolutely vital to the movement toward a world free of MS,” Janet said. “In public policy matters, there is always strength in numbers. The first and most important way that principle plays out is in the engagement of our own members – the MS Advocates who are willing to take action to support research and encourage funding for programs that are vital to people with MS.” These volunteers take on the responsibility of advocacy as they get first-hand knowledge of how legislature affects people living with MS. “Being an MS Advocate is very empowering,” said Stephanie Walgamott, community development manager and staff liaison to our Illinois MS Advocates. “We all have the ability to affect change and when someone gets involved with MS advocacy, you get to see that in action.” One of easiest ways to get engaged is by joining “Action

For Stephen, volunteering is a no brainer. “Being an MS Advocate just makes sense,” Stephen said. “This is just one avenue that I have been fortunate enough to be a part of. We are obligated to educate others about MS and make it possible for everyone to have the chance to live life to its fullest.” You also don’t have to write letters or meet with congressmen to be an MS advocate. “I believe anytime you volunteer for any of the MSrelated activities, you are an advocate,” Amy said. “A lot of people either do not know what MS is or they do and don’t know how they can help. Anytime you can educate someone or introduce someone to the MS Society, you are an advocate for the cause.” TOLL FREE NUMBER 1 800 344 4867

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VOLUNTEERS

Through The Eyes of Volunteers Margalyn P. Payne Therapeutic Recreation Intern, Program Volunteer, Walk MS Participant

SPECIALTHANKS TO OUR BOARD We“My would like to thank internship a very dedicated experience hasand hard-working group of been a hot air balloon volunteers, our Board ride. It began on of Trustees. See page 13 for a the ground and has fullrisen listing to of themembers. sky!” 6

The first day of RC-260 (Introduction to Recreation Therapy) was a shocker. My professor Nancy Price, CTRS, told us she had MS. MS? Well what is it? Is it deadly? I had no idea what it was but I knew I wanted to learn more about it. I didn’t know she had MS until she told us. I never saw Nancy with a cane, but she held on to the wall a lot. She told us that while walking if she grabs your arm don’t be afraid, just guide her along the way. At the end of my junior year, I decided to complete my internship at the MS Society. I could have chosen to do it in the mountains or in another country. Instead, I wanted to know what the organization did and how I could help Nancy. Nancy is the best teacher I have ever met in my life. She really cares for her students and makes sure we learn the material. After taking the class, I realized that having a disability is not the end of the world. The word disability means ABSOLUTELY nothing to me because I believe in ABILITIES not disabilities. During my phone interview for the internship, I was asked to volunteer for Family Weekend at Touch of Nature in Carbondale. So, during my fall break I went to Carbondale, IL for a weekend full of fun. I had such a wonderful time. I met so many different people.

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There is so much intrinsic and extrinsic reward from volunteering. The start of volunteering began for me in high school. We were required to complete 50 volunteer hours in order to graduate. After starting I thought ‘wow this is so easy.’ So I continued past the 50 ‘mark’ and ended up with 150 hours before graduation. The first week of my internship consisted of an overview of the whole organization. I heard about Walk MS and dedicated the next few to weeks getting a team together. I emailed a bunch of friends and told them the idea of having a team for Walk MS. They all agreed that this would be a great gift to Nancy and the organization. I named the team, Team Nancy, and since the majority of my team went to Southeast Missouri State University, we decided to walk in Cape Girardeau. My internship experience has been a hot air balloon ride. It began on the ground and has risen to the sky! I have worked with many different clients and their families through the Chapter’s Wellness programs. During my experience as an intern, I have gained knowledge in therapeutic recreation, programming, and administration. I now know I am on my way to becoming a young professional!

volunteer

shuffled through the health care system with no clear diagnosis, affected me. My cousin was told that she had MS after the birth of her second child. I still hadn’t really thought about being a volunteer for the National MS Society. My family of six and a busy work life took all of my time. My career path went from bedside nurse to health plan nurse in June 2000.

Through the Eyes of Volunteers

Cindy Johnson Bike MS Medical Volunteer As a nurse I see the affects MS has on people living with it and their families. Throughout my career I have been touched and amazed at the courage and fortitude that they display. MS was all around me - at work and in my personal life. One of my dearest friends had lost her mother to MS many years ago. Her tragic story of how her mother was

VOLUNTEERS NEEDED!

Over 800 volunteers are needed to help make the Bike MS: Express Scripts Gateway Getaway Ride 2009 in Columbia, MO a successful fundraising event for the Chapter. Volunteers are needed for September 11-13. We welcome volunteers

In my role as Director of Care Coordination for Mercy Health Plans, I manage the nurses who provide individual case management services to patients with chronic disease and catastrophic illness. I again experienced the struggles and challenges that MS patients face on a daily basis in our case management efforts.

find every excuse not to volunteer: not enough time, too busy with my family activities, work commitments. He was relentless and I finally decided to meet with the Chapter to discuss what the volunteer role might entail. I was a reluctant volunteer, but that changed once I experienced my first Bike MS weekend. The endurance and giving spirit of the bikers and the volunteers was infectious. I found myself making lists of improvements that we could implement the next year. I was hooked! I quickly enlisted the help of other Mercy Health Plan nurses and physicians. I now serve on the Bike MS Logistics Committee and have responsibility for the Medical Team.

As a volunteer I get more than I give. I enjoy the rewards of great and lasting friendships, both professionally and Mercy Health Plans had a Bike MS Team and one of my coworkers asked personally. I’m certainly glad that I took the plunge and volunteered if I would like to help with the ride. Not being a cyclist, I knew that being and the Chapter has something for on a bike for two days and 150 miles everyone. So if you’ve been asked or have thought about volunteering – go was out of the question! He quickly for it. You might get hooked like I did. convinced me that I could volunteer on the Medical Team. I did try to

There’s something for you!

Look at all the areas in which you could help at Bike MS!

across all ages and skill levels. Volunteers will receive a commemorative t-shirt for their service. Please visit www. gatewaymsbikeride.org, call (314) 446-4164, or email bobbie.appelbaum@ gatewaymssociety.org to learn more.

• • • • • • • • • • •

Bike Storage Communications Course Marshals Decorations Finish Line Cheering Fun & Festivities Massage Therapist Meal Service Medical Volunteer Parking Photography

• • • • • • • • • • •

Registration Rest Stop Route Marker SAG Driver Site Closing Site Set Up Staff Rest Stops Team MS Host Truck Driver Truck Assistant Volunteer Check-In

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RESEARCH

Nervous System Protection and Repair conference by Eric Hübler, Staff Writer

said Patricia O’Looney, the Society’s vice president of Biomedical Research. “You need collaborations.” The initiative consists of four projects, each with the common goal of discovering ways to protect and repair brain tissue from the damage caused by MS.

Odette Veneziano

In the United States:

From left to right: Drs. Peter Calabresi, Gavin Giovannoni, Charles ffrench-Constant, and Ian D. Duncan. Let’s be clear: to the layperson, the presentations at the Nervous System Repair and Protection in MS Conference might not have seemed very clear. The meeting, in New York City in January, consisted of over 70 scientists talking to scientists and showing each other slides with titles like “RXRs and RA signaling.” So let’s be clear about something else: for anyone interested in MS, the event was historic. The Nervous System Repair and Protection Initiative involves more researchers, at more labs worldwide, than any other MS 8

research initiative. So bringing so many participants together to share their results — and their hopes for continuing the work beyond 2010, when the original grant from the National MS Society concludes — was a milestone in collaboration.

Creating milestones — together Collaboration is at the heart of everything the Society does—including research. “The questions these days are so big, the lone scientist in the corner lab doesn’t cut it anymore,”

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• Peter Calabresi, MD, and his team at Johns Hopkins University are investigating better ways to detect and quantify tissue injury. They are also testing agents that may protect the nervous system from further damage. • Ian D. Duncan, BVMS, PhD, FRCPath, FRSE, and his team at the University of Wisconsin at Madison are developing better imaging technologies to follow damage—and detect repair, which is essential for tracking whether repair strategies are working. They are also working on potential cell therapies. And across the “pond”:

• Gavin Giovannoni, MBBCh, FCP, PhD, of Queen Mary University of London, and his team are attempting to turn cells into vehicles that can deliver “repair” molecules to injured areas. CONTINUED ON PAGE 9

RESEARCH CONTINUED FROM PREVIOUS PAGE

• Charles ffrench-Constant, PhD, FRCP, of the Universities of Cambridge and Edinburgh, and his team are working on identifying and amplifying natural repair factors in the brain. Each has spawned new experiments and swept in more researchers. At Johns Hopkins, 22 people were receiving Promise: 2010 funding, yet 62 people were participating — meaning, in effect, 40 free brains for the MS movement.

Supporters and researchers connect Several donors also attended the conference to learn where their aid is going. “It’s just great to see this kind of progress. You can get a sense of the enthusiasm, the magnitude of it,” said longtime Society supporter and Honorary Life Director Charlie Goodyear. “It was remarkable this morning, seeing someone from London ask a question of someone from California and establish an immediate rapport,” said the San Francisco-based architect and architecture professor Peter Thaler, who lives with MS. “It’s not unlike teaching architecture: talking about what happened in the past and what could happen in the future.”

E.J. Levy, an active fundraiser who lives with MS and closely monitors research progress, said she was grateful for so many scientists trying to cure her, but she also wished the initiative had yielded more clinical trials by now. “I realize that research can be a tortoise, but I’d rather have the hare,” she said. As if in answer, researchers at the conference announced several small trials on cell therapy, two years ahead of the original plan of Promise: 2010. Cambridge’s Siddharthan Chandran, MD, PhD, described one such trial involving the optic nerve, which he hopes will benefit the “missing tribes” of MS — those with advanced disease who have few medical options.

Motivation to keep moving Volunteers are essential to clinical trials; without them, clinical trials either take years to complete or are not completed at all. Dr. Chandran wished MS patients could be enrolled in trials routinely, as has been done in oncology for decades. Some existing drugs that could be tested in MS are off-patent and “cheap as chips,” he said. Dr. Calabresi spoke about a patient who was diagnosed at 17 after experiencing foot drop while jogging, and who at 26 uses a wheelchair. “She looks at me and says, ‘Can’t you do anything for me?’ It just makes me sick, but it’s also an incredible motivator to take that energy and put it back into the work.”

“It would be terrific to come back here in two years’ time and tell you the final outcome of that,” he said. More trials are coming, the project leaders promised. “I’m a big believer in getting your feet wet. As we get into these clinical trials, we’ll learn,” Dr. Calabresi said.

For the latest research developments visit nationalMSsociety.org/ Research and click on Research News.

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MS CONNECTION

Ask The Professional Patient Question: Why does heat have such a tremendous affect on people with MS? What can I do to better cope with the heat this summer?

Jennifer Richards is a Nurse Clinician in the Department of Neurology at the University of Missouri – Columbia.

The loss of the protective myelin sheath surrounding the nerves of the central nervous system causes electrical impulses to move more slowly. Exposure to heat makes these impulses move even more slowly. As many as 60-80% of people with MS experience heat sensitivity. With a rise of just ¼-½˚ in core body temperature, you may start to notice symptoms such as vision changes, muscle weakness, spasticity, fatigue, or cognitive impairments. An increase in neurologic symptoms may seem like a relapse or an exacerbation of MS, but it is actually a “pseudoattack”. Pseudoattacks do not indicate worsening MS and reverse once the body is cooled.

The hottest days of summer are just around the corner and it is very important to take steps to stay cool. • Pay attention to your body. Cool down if warning signs appear such as: tingling of extremities, heavy feeling legs, increased fatigue, blurred vision, or cognitive difficulties. • Check weather forecasts before planning activities. • Plan activities at the coolest times of day - morning and evening.

• Avoid extended periods of time in warm rooms. Even small increases in body temperature can trigger an increase in neurologic symptoms. • Cooling blankets and pillows are available. These products are either filled with or soaked in cold water without transferring wetness. These products can be found at the following websites: www.soothsoft.com and www.silvereagleoutfitters.com

• Utilize cooling devices. There are many varieties available: vests, bandannas, wrist bands, waist and • Wear loose, breathable (cotton), lightweight, lightneck wraps, bra inserts, and hat coolers. Here are colored clothing. Dark-colored clothing absorbs some websites where these products can be found: sunlight. www.polar-products.com, www.miracool.com, • Stay inside with a fan or air conditioning during times www.bodycooler.com, www.coolvest.com, of extreme heat and/or humidity. www.stacoolvest.com, www.steelevest.com • Stay hydrated. Drink plenty of water or chilled juice. Avoid caffeine. Carry water with you. • Wear a well-ventilated hat with a sun blocking brim. • Exercise in a cool environment. If you do aquatic exercise, make sure the pool temperature is between 80-84˚F.

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• During heat waves, resources may become available for people without air conditioning. Should you need to seek a cool environment during a heat warning, contact your local Community Action Agency at www. communityaction.org, or contact the United Way. Managing MS in the heat can be challenging, but using some of the strategies and/ or products listed above can make it easier.

Ways to Give

Honor Someone Special or Celebrate a Special Event When Doug and Joann tied the knot last spring, they also established a scholarship fund. In lieu of wedding gifts, they asked for contributions. The donations allowed the couple to realize their dream of providing a four-year scholarship to a worthy student living with MS. It was easy. They used the Society’s Honorary Fund page. Anyone can join the movement and honor special people and events. The Society’s Honorary and Memorial Fund page lets you create online tributes or memorials that can be personalized with photos and stories. Fund pages allow colleagues, friends and family to make online donations on behalf of the honoree. Tools help you get the word out and track the progress of your fund.

anniversary, or help someone celebrate Mother’s Day or Father’s Day. • Create a memorial fund in memory of a loved one who has passed.

Honor Someone— Long-Term Luis, diagnosed in 2005 Go to nationalMSsociety.org and click on Donate. From there, click on Create a Fund. From there you can: • Create an honorary fund to recognize an accomplishment, a milestone, or just say thank you. Commemorate a birthday, wedding,

To learn how to establish a charitable gift annuity in tribute to someone special, contact director of individual giving Beth Bauer at 314-446-4177 or beth.bauer@gatewaymssociety. org or visit nationalMSsociety. org/plannedgiving.

Help the Gateway Area Chapter when you use your FREE Prescription Discount Card! Help the Gateway Area Chapter when you use your FREE Prescription Discount Card! For additional benefits visit the website below. A portion of the purchase price for additional benefits goes to the Gateway Area Chapter of the Multiple Sclerosis Society. For additional benefits visit the website below. A

portion of the purchase price for additional benefits SmartBenefitCard.com/gatewayms goes to the Gateway Area Chapter of the Multiple Sclerosis Society.

SmartBenefitCard.com/gatewayms

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FUNDRAISING

Rockin’ Out for Mom & MS

When Kyle Andrews was three years old, his mother, Sherri Stanczak, was diagnosed with multiple sclerosis. While it’s impossible for Kyle to know exactly what his mother goes through, he does know that his mother never lets MS stop her. The persistence of Kyle’s mother inspired him to do something for her. On January 9, the music buff and member of a rock band did just that. Despite never organizing a concert or event before, he hosted a rock concert on behalf of his mother to raise funds for MS. “She never lets MS stop her from being a great mom, grandma, friend, wife, sister, and person in general,” Kyle said. “She has shown so much strength and courage that I wanted to do something big to show her how much she means to me. So, I put on a rock show in her name.” Without the assistance from any sponsors and having had no previous event-planning experience, Kyle jumped right into planning the fundraiser. He used social networking sites like Facebook and MySpace along with sending e-mails and 12

passing out flyers to promote the event that was held at Fubar on Locust in St. Louis and featured five bands. His work paid off, as he raised more than $1,000 to help create a world free of MS. The success of his first concert has inspired him to do it again – only this time bigger and better. “We raised money from admission and t-shirt sales, but I think we can do better.” Kyle said. “My goal for the next show is to do three times that. I didn’t have any sponsors and I’m not very talented when it comes to the whole business aspect of promoting. But I have an assistant for the next show who is very good with that portion of things.” While planning an event like this can be stressful at times, it’s the inspiration from his mother that keeps Kyle going. “The first show was one of the most rewarding and exciting experiences of my life,” Kyle said. “The glow on my mom’s face all night was totally worth the stress and work put into it. She taught me how to stay positive regardless of your problems, how to fight through hard times and most importantly how to have a good

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Kyle Andrews’ mother Sherri Stanczak inspired him to organize a concert to raise money for the Chapter. time no matter what you are doing.” Kyle’s concert on behalf of his mother is terrific example of a third party event that helps the Chapter. Volunteers run these events independently from the Chapter and the possibilities have become endless. For more information, contact Amanda Haught by at 314-446-4182 or amanda.haught@ gatewaymssociety.org. If you have an idea for a third party event, you may be surprised by the reaction you get. “I couldn’t have asked for a better experience,” Kyle said. “The support from complete strangers is just unreal. It just helped me realize that we are all in this together.”

Fiscal Year 2009 Board of Trustees

Lynda Baris

Bill Dowd

Timothy M. Huskey

Steven S. Poindexter

Jim Blair

Alan J. Fine

Richard E. Jaudes

Steve Richardson

Michael E. Burns

J. Brendon Gallagher

Michelle Keating

Nancy Schnoebelen

Robert W. Cannon

Dr. Barbara Green

Kurt N. Kientzle

Michael Sindelar

Gerard T. Carmody

Lyle F. Gulley Jr.

David Kodner

Helmut Starr

Leann Chilton

Sean J. Hogan

Patrick Larmon

Dr. Florian P. Thomas

Dr. Anne Cross

Kristen Gulley Holton

Patrick McNamee

Steve Walli

Jacquelyn L. Dezort

E. Michael Houlihan

Denise M. Pisciotta

Executive V.P. J.W. Terrill, Inc.

Principal Moneta Group

Senior Vice President Marketing Direct Inc./ Clearwater Express Inc.

Group President BJC HealthCare

Partner Carmody MacDonald

Director Govt. Relations BJC Healthcare

MS Clinic Director Neurologist Washington University School of Medicine Community Volunteer

Partner Dowd & Dowd, P.C.

Partner Brown Smith Wallace, LLC

Principal Sirius Financial Strategies

MS Center Director Neurologist St. John’s Mercy Medical Center

Broker AHM Financial Group, LLC

President Ambulatory Services SSM

Producer AHM Financial Group, LLC

President Houlihan Development Company

Officer Greensfelder, Hemker & Gale, P.C.

Chair Labor Dept. Thompson Coburn LLP

Nurse Educator (RN) St. John’s Mercy Medical Center

Senior Vice President Not-for-Profit Services M&I Institutional Trust Services President David Kodner Personal Jewelers

President & CEO Bunzl Distribution

Executive Vice President Express Scripts, Inc.

Attorney Lewis, Rice & Fingersh, L.C.

Brand Manager Handi-Craft Company

V.P. Marketing & Communications St. Louis County Economic Council

Partner Pricewaterhouse Coopers LLP

Managing Director, St. Louis Polsinelli Shughart

Professor of Neurology St. Louis University MS Center Director St. Louis VA

President and CEO United Healthcare of the Midwest, Inc.

Senior Manager UHY Advisors MO, Inc.

TOLL FREE NUMBER 1 800 344 4867

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PROGRAMS

Keeping The Chapter Moving The National MS Society’s goal is to keep people with MS moving. Dedicated office volunteers help keep the Chapter moving on a daily basis. Volunteers prepare mailings, assemble participant packets, make thank you phone calls, assist with computer data entry and just about anything else they are asked to help the Chapter run as efficiently as possible.

“She asked if there was anything the MS Society could do,” Fred said. “So my wife and I came in and talked to her for a good hour and a half. That made me so comfortable to have someone sitting down, talking and explaining things to me. It was more explanatory than a doctor. She made my wife and I very comfortable.” During that meeting, Fred, who had worked as a pressman and a dairy clerk but couldn’t with his MS, asked if there was anything he could do to help the Chapter. “I thought, they helped me, I’ll help them,” Fred said. “I’m sitting at home. I can’t work. I want to do something.”

Fred Glover began volunteering in the office at the beginning of the year. Fred Now Fred comes to the office three was diagnosed with MS in late May of days a week, sometimes even five to help in any way he can. 2008. “I woke up and was blind in my left eye,” Fred said. “My boss told me I couldn’t go to work until I had it checked out. I started to drive home and got real dizzy so I called 911. They thought I was having a stroke.” After his doctor prescribed a steroid medication, a couple of days later he regained vision, but he was also given the diagnosis of MS. While in the hospital he learned of the MS Society, but was still dealing with news of the diagnosis. “That went through one ear and out the other because I was depressed about being diagnosed,” Fred said. But about six weeks later, Fred received a call from one of the Chapter’s program care managers. 14

Fred Glover (right) is among the many office volunteers who help keep the Chapter office moving on a day-to-day basis. something in common,” Fred said. “We talk about different day-to-day things that happen to you. It makes you feel good that someone else knows what you’re going through and you’re not goofy because you have MS. I’ve enjoyed the camaraderie and interacting with the other volunteers.”

Fred stepped out of the office in April for the Chapter as he formed a Walk MS team. “Fred’s Guardian “Helping here makes me feel really Angels” were 25 strong at Walk MS in good, Fred said. “It’s the right thing to Clayton on April 19. The rain couldn’t do. I may have the disease but I’m here dampen their spirits, as Fred got to help too.” orange ponchos for his walkers, which While stuffing envelope after envelope included family and members of a girl scout troop. can become monotonous, Fred realizes he’s contributing and helping “We had a great time,” Fred said. the Chapter move toward a world free “You could tell where my team was of MS. because of those orange ponchos. But everybody had fun.” “I’m using my brain and hands,” Fred said. “I’m doing something and it’s keeping me active. Working here makes me feel like I’m useful.” Fred has also gotten the chance to learn more about MS and has met other office volunteers, some who are in situations similar to his. “It’s nice to communicate with someone who has MS. You have

JOIN THE MOVEMENT: nationalMSsociety.org

While Fred’s life has changed with the diagnosis, he knows he can adjust. “I’m living with it,” Fred said. “I’m going to do the best I can with it and the people at the Chapter have helped me realize that.” The Chapter continues to benefit from all the hours of hard work from Fred and all the other office volunteers.

“It is also important to attend these events to keep finding a cure at the top of everyone’s minds.”

EVENTS

Chapter Invades Downtown St. Louis What do The Four Seasons Hotel, Kiener Plaza, the FBI, and a bunch of people wearing orange have in common? If you were anywhere near downtown St. Louis on April 23, you may know the answer to that question. On that day, the movement toward a world free of MS hit downtown St. Louis. In the early afternoon, the Chapter held its inaugural Women on the Move Luncheon. Later that evening and into the night the Chapter held its annual Steppin’ Out for MS Night Walk! The Women on the Move Luncheon, a luncheon aimed at supporting women affected by MS was held at the new Four Seasons Hotel. Keynote speaker Sue Thomas, a former FBI agent and now an inspirational speaker who lives with MS, addressed the 300 attendees and the Woman of Courage award was presented to Denise Pisciotta. The Steppin’ Out for MS Night Walk stepped off from Kiener Plaza just hours after a St. Louis Cardinals game on a picture-perfect evening. The 500-strong participants walked two miles around the St. Louis Gateway Arch grounds and afterwards enjoyed great food and the tunes of the Soulard Blues Band. Both events brought laughter, tears, and achieved one very important goal: raising awareness to help us move closer to a world free of MS. “Both events were terrific, it was the best day I have had in a long time,” said Jill Laux, who attended both events. “The luncheon was beautiful and inspiring. Sue Thomas was absolutely amazing! I was moved to tears several times. And she made an extremely persuasive call to action for donations.” While the day was a success in our movement toward a world free of MS, these events not only inspired those living with MS, but also those not directly affected by the disease. One participant who does not have MS believes that these types of events help raise awareness for MS. “For me, it is important to be reminded of exactly how easy my life is,” Jill said. “People living with MS face daily challenges that most of us do not have to encounter. It is also important to attend these events to keep finding a cure at the top of everyone’s minds.”

TOLL FREE NUMBER 1 800 344 4867

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(800) 344-4867

FROM THE PRESISDENT

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 Eric Hübler Tasha Hudson Cindy Johnson Beth Norviel Margalyn Payne Jennifer Richards 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

A Letter From the President Phyllis Robsham

“One is not born into the world to do everything but to do something.” When I think about these words by poet, writer and philosopher Henry David Thoreau, I think of our mission to create a world free of MS and how our valued volunteers help us get one step closer each and every day. Without the tireless dedication of our volunteers, we would not be able to accomplish all that we do. Walk MS events across the area just finished up and without all the volunteers who worked registration, drove trucks, set up and tore down and served breakfast and lunch, the events would not have been as fun or successful as they were. Walking into our office day after day, I continue to see the smiling faces of our volunteers as they stuff envelopes, make phone calls or help us with yet another project. Our thanks and gratitude can never be enough. Volunteers step up to help us with our mission in a variety of ways and on a variety of levels. Our Board of Trustees is a group of dedicated individuals that help guide the Chapter in its vision of a world free of MS. I personally would like to recognize each and every one of them for their gift of time, service and commitment. You can see the full listing of our Board on page 13. I would like to invite each of you to take a look and see where you might be able to spare a few minutes or hours of your time each week to become a volunteer with us. The possibilities are endless, as will be your reward. Whether you want to volunteer at one of our events or programs, or you want to make phone calls or write for our newsletter, we have a place for you. Or maybe you want to advocate for issues important to those living with MS, or help in our outreach to healthcare professionals. In whatever way you choose to join the volunteer movement, you will be helping over 6,000 people in our area living with MS. Decide today what your “something” will be.

JOIN THE MOVEMENT: nationalMSsociety.org

Gateway Area Chapter

happenings

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making the most of life and the least of MS

National Multiple Sclerosis Society

Michael, diagnosed in 2004

Talk MS Volunteers Extend Chapter’s Reach In this issue Nerve Repair & MS . . . . . . . . . . . . . . . . 20 Wellness Network. . . . . . . . . . . . . . . . . 22 Midwest Teleconference Series . . . 26-27 Talk MS Groups . . . . . . . . . . . . . . . . 30-31

Feeling isolated and misunderstood are common feelings individuals diagnosed with multiple sclerosis often experience. Finding a safe environment in which to express these emotions and finding someone who understands them can often be a challenge. The Chapter understands the need for those living with the disease and their caregivers to have an outlet to express themselves and try to get answers. Talk MS Group leaders and Telefriend volunteers are people with MS who are trained through the Chapter and help to facilitate these

programs for other people with MS. Members of Talk MS groups share a belief that positive change happens through individual efforts with the support of others. These groups provide an opportunity for individuals to share information, discuss common concerns, regain selfconfidence and experience the joy of camaraderie amongst people like themselves. Co-leader for “MS Food, Fun, and Friends” Talk MS Group, Debbie Morrissey, reflects on her first Talk MS meeting over 12 years ago. Story continued on page 18

Your Source for Knowledge, Wellness, and Support TOLL FREE NUMBER 1 800 344 4867 17

Gateway Area Chapter

Story continued from page 17

HAPPENINGS

While now taking on the role as group coleader, she vividly remembers the point in her life where she needed to be around people just like her. “I went to my very first meeting the night before my first injection in April 1995,” says Debbie. “I was terrified and needed to be around people who would truly understand my fears. Everyone in the group understood what I was going through. We talked around the room and shared our experiences and fears. For me, it was exactly what I needed.” Another Talk MS volunteer Jim Walker, enjoys sharing the wisdom he’s gained over the years to newly diagnosed people. “I like sharing information with people,” he said. “There are a lot of newly diagnosed people who aren’t sure about MS and I really enjoy helping them. I volunteer because it gives me a reason to get out of the house and contribute. There are a lot of needs for people with MS and the MS Society works hard but can’t do it all.” While loading and unloading trucks at Bike MS or Walk MS isn’t for everybody and not everyone can get to the Chapter office to volunteer, Talk MS provides another way for people to give back. “I believe in the principle of giving back,” said Toni Kodner, a Telefriend volunteer. “Each person should give up something of themselves in this life and getting involved in a

support group takes your mind off of your own problems. I can be feeling down about life with MS but when I talk to others it helps me keep things in perspective.” Talk MS volunteers like Toni also find it rewarding that she is still able to utilize her talents. When asked what made her want to volunteer, Toni said, “I like being able to use the skills I gained from previous work experience. It’s nice to know that with all the time invested gaining those skills early on, I am still able to use them today.” These Talk MS volunteers work closely with the Chapter and work as an extension to help get people with MS the resources they need to best live with their MS. Oftentimes, the volunteers also learn something new about living with MS. “MS is a terrifying place to be,” Debbie said. “You need someone to talk to and a place to relax amongst people who are experiencing what you are going through. I can’t imagine not being involved. I’ve been going to the group since 1995 and each time I hear something that I hadn’t heard before.” For more information on Talk MS programs, please visit www.gatewaymssociety.org or contact Allison Harper, Chapter program coordinator, at 1-800-344-4867 or allison. harper@gatewaymssociety.org.

1.800.344.4867

happenings New Connections 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.

O’Fallon, MO Thursday, June 11 Bristol’s Seafood Grill 2314 Technology Drive O’Fallon, MO 63368-7279 Time: 6-8 p.m. Join us for this special evening as we welcome Brett Massingham, a professional golfer and a person living with MS for more than a decade. A three-course dinner will also be included with this free program. Space is limited so make your reservation today! Registration Deadline: May 29 St. Louis-South County Wednesday, September 2 Lodge at Grant’s Trail 4398 Hoffmeister Ave. St. Louis, MO 63125 Time: 6-8 p.m. A three-course dinner will also be included with this free program. Space is limited so make your reservation today! Registration Deadline: August 24 This program is sponsored by Bayer Healthcare.

Please mark which event you would like to attend:

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O’Fallon, MO Thursday, June 11, 6-8 p.m. Bristol’s Seafood Grill 2314 Technology Drive O’Fallon, MO 63368-7279

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St. Louis – South County Wednesday, September 2, 6-8 p.m. Lodge at Grant’s Trail 4398 Hoffmeister Ave. St. Louis, MO 63125

HAPPENINGS

Staff members from the Chapter will be attending to let you know what we do and how we can help.

New Connections Registration

Name_____________________________ Guest name_ ________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ Date of Diagnosis______________________ Do you prefer a vegetarian meal?_ ___________ Do you use a mobility device?_______________ If yes, what type?______________________ 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.

www.gatewaymssociety.org

Gateway Area Chapter

Researchers Have Strong Allies In Developing Therapies HAPPENINGS

Researchers have a strong ally in trying to develop therapies for nerve repair in people with multiple sclerosis. “The MS brain never gives up trying to repair itself,” said Dr. Bruce Trapp, PhD, Chairman, Neurosciences, Cleveland Clinic. Trapp has been studying MS since 1973 and will be the featured speaker at the annual John L. Trotter Research Program Thursday, September 24, at the Sheraton Westport Hotel – Lakeside Chalet. “Sometimes the brain does a very good job of repairing the myelin,” Trapp said. “Unfortunately it doesn’t do this all the time. The fact that the MS brain has the capacity to repair itself is encouraging to researchers because we should be able to manipulate the process. The key is to understand why it succeeds and why it fails. Through that we can develop therapeutics that should be able to advance the repair process.” While the cells to create new myelin are being created in the brain of a person with MS, the cells aren’t successful in completing the process. Researchers like Trapp are trying to find out why the cells aren’t successful and what can be done to facilitate the process. “In the very chronic stages of the disease, the brain is still making new myelin-forming cells,” Trapp said. “You can’t get new myelin without a new cell and this is still occurring in the brain. Unfortunately, the cells aren’t finishing the job of making the myelin. One of the therapeutic targets we have is to drive the cell to finish the repair process.” Trapp said there are two approaches considered in MS to help cells finish the process and create new myelin: manipulate and encourage the natural 20

repair process and cell therapy or cell replacement by increasing the number of myelin-forming cells by transplanting cells into lesions. “Both of those fields, manipulating normal repair and cell transplantation, are active areas of the cell research community,”Trapp said.“There are positives to both and I believe both of these approaches need to be supported and should be developed in parallel. Maybe the answer is a combination of those two. The endogenous process of manipulation is more attractive because you don’t get into all sorts of controversial areas with stem cells. But my belief is both approaches need to be supported.” Dr. Trapp and his team at the Cleveland Clinic conduct their research by examining the MS brain and studying the repair process. “We do that by looking at brains donated to us by MS patients,” Dr. Trapp said. “They sign up to donate their brains and when they pass away we collect those brains very quickly. We’ve been looking at MS lesions for success and failure of repair and trying to characterize attempts of the brain to repair itself.” At the John L. Trotter Program, Trapp will: g explain what myelin is g why myelin is important g how new myelin is created g show that the MS brain continuously tries to repair itself g discuss therapies in progress to try to enhance repair During his years of research in MS, Dr. Trapp has appreciated one of the greatest resources he’s had, the MS patient. “The cooperation of the MS patients in helping our studies go forward through the brain donation program and their participation in clinical trials has been a huge positive,” he said. “I’m a big fan of MS patients.”

1.800.344.4867

happenings John L. Trotter Research Program John L. Trotter Nervous System Repair Research Program Thursday, September 24, 2009, 7-9 p.m. Nervous System Repair Registration Sheraton Westport Hotel – Lakeside Chalet [ ]

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 is sponsored by Bayer Healthcare, Biogen Idec, Teva Neuroscience, United Access and Wachovia.

Thursday, September 24, 7-9 p.m. Sheraton Westport Hotel – Lakeside Chalet

Name_____________________________ Guest name_ ________________________ Address _ __________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-mail_____________________________ 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.

www.gatewaymssociety.org

HAPPENINGS

191 Westport Plaza St. Louis, MO 63146 Keynote Speaker: Bruce Trapp, PhD Chairman, Neurosciences Cleveland Clinic

HAPPENINGS

Gateway Area Chapter

Wellness Network Brand New Program!

Wellness Network Registration

The Wellness Network will connect people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These will be similar to the Chapter “Talk MS” groups but each call will focus on a different topic relating to wellness.

Please mark the sessions in which you would like to participate:

Topics will range from nutrition, exercise, leisure, social well-being, recreation, and locating and identifying resources. 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. They will be the last Thursday of the month 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. 22

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Introduction to Wellness Network and Benefits of Exercise for People with MS Thursday, June 25, 7-8 p.m.

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Motivation and Commitment for Wellness Thursday, July 30, 7-8 p.m.

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“Know Before You Go” Exercise and Accessibility Thursday, August 27, 7-8 p.m.

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How to Count Everyday Activity as Exercise Thursday, September 17, 7-8 p.m. (one week earlier)

Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-mail_____________________________ Confirmation preference (circle one): Email Mail 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 is sponsored by Bayer HealthCare, EMD Serono and Pfizer.

1.800.344.4867

happenings Research MS

Research MS Registration Please mark which program

MS Specialists will provide up-to-date information on research in MS in your community on the following topics: g Latest information on research and new therapies g New data on disease modifying medications for MS SPEAKERS & LOCATIONS August 29 Noon to 2 p.m. Columbia ARC 1701 W. Ash St. ,Columbia, MO 65203 Dr. Barry Singer, The MS Center for Innovations in Care, St. Louis MO Registration deadline: August 25 August 29 Noon to 2 p.m. Holiday Inn Carbondale - Conference Center 2300 Reed Station Pkwy., Carbondale, IL 62901 Dr. Becky Parks, John L. Trotter MS Center, St. Louis MO Registration deadline: August 19

Saturday, August 29, Noon to 2 p.m. Columbia, MO with Dr. Barry Singer

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Saturday, August 29, Noon to 2 p.m. Carbondale, IL with Dr. Becky Parks

HAPPENINGS

Research in MS is progressing at a remarkable rate, with more potential therapies in the pipeline than at any other time in history. The National MS Society is a driving force of MS research, supporting and stimulating world-class research into ways to prevent, better treat and cure this unpredictable disease of the brain and spinal cord. Learn how far we’ve come, where we’re going and what the Society and others are doing to move toward a world free of MS.

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Mail

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. These programs are sponsored by Biogen Idec, Teva Neuroscience, United Access and Wachovia.

www.gatewaymssociety.org

Gateway Area Chapter

HAPPENINGS

MS Aquatics

METRO AREA

Bridgeton Community Center Contact: Cole (314) 739-5599

Wellbridge Athletic Club – (Town & Country) Contact: Susan (636) 207-3000

Carondelet YMCA Contact: Diane E. (314) 353-4960

MID MISSOURI

Center of Clayton Contact: Diane (314) 353-4960 Chesterfield JCC Contact: Fanchon (314) 432-5700 x3157

DIVE IN!

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.

Why aquatics?

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 and Pfizer Inc. 24

Columbia Activity & Recreation Center Contact: Laurie (573) 874-7460 Jefferson City YMCA Contact: Pat G. (573) 761-9021

Emerson Family YMCA (North County) Contact: Elaine (314) 521-1822

Mexico Family YMCA Contact: Consuelo (573) 581-1540

Hazelwood Community Center Contact: Jill A. (314) 731-0980

Longbranch YMCA (Classes taught at the Comfort Inn pool) Contact: Martha M. (660) 385-1818

Jefferson College (Hillsboro) Contact: (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 Wellbridge Athletic Club –( Clayton) Contact: Susan (314) 746-1500 1.800.344.4867

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

SOUTHEAST MISSOURI

Black River Coliseum Contact: Mandi E. (573) 686-8009 Cape Girardeau Municipal Pool Contact: Pat Grebe (573) 335-4040

happenings

Yoga Sites St. Louis:

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 lindalutz@mac.com

Metro & Southern Illinois 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

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 July 7 - Sept. 1, 5:30 – 6:30 p.m. (Beginner Class) 7 – 8 p.m. (Gentle Yoga Class) Thursdays July 9 - Sept. 3 9:30 a.m. (Beginner Class)

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

www.gatewaymssociety.org

Your Yoga for Your MS

Yoga is an ancient practice that combines posture, breathing, and meditation to connect body, mind and spirit. For people with MS it can provide the following benefits: Chronic pain relief Diminishes fatigue Relieves depression and anxiety Improves spasticity Helps overcome stiffness Increases oxygen in the blood Promotes relaxation and sound sleeping g. Encourages living in the moment g. Provides a fun way to exercise and meet new friends g. g. g. g. g. g. g.

Adapting Yoga to All Ability Levels MS yoga instructors have additional knowledge of MS and its symptoms. Instructors modify postures to your ability level using different props such as blankets, chairs, straps or blocks which helps eliminate stress on the joints and make postures more comfortable and safe. 25

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

Mid Missouri

Gateway Area Chapter

HAPPENINGS

Teleconference Series Helps You Put The Puzzle Together Multiple sclerosis certainly can be a puzzling disease. It affects everyone in different ways. Some days its symptoms are barely noticeable and other days they can be overwhelming. But the monthly Midwest Teleconference Series can help. Pat Fergus, who was diagnosed two years ago, explains how the teleconferences help her. “You get your puzzle pieces and you can start to put them together,” she said. “You may just get one piece from a teleconference, but if you can gradually get them and put them together, you’ll get a better handle on the disease. It’s a pretty overwhelming diagnosis. There are so many different facets to it and no one knows how it’s going to affect you precisely. Even the physicians don’t know how it’s going to affect you in the future, so it helps you feel like you have a handle on your own disease.” The free series is designed to help people with MS gain the information they need to know through the comfort and privacy of their own homes. Every second Monday of the month a new topic relating to MS is discussed with an expert in the field. The series is a collaboration of four Chapters: Gateway Area, Greater Illinois, Indiana State and Mid-America. “MS tries to control my life, but the teleconference series is one way I have to fight back by having the most current

Teleconferences See Page 27 for a list of upcoming teleconference topics and how to register for this free program. Or to register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the teleconferences in which you would like to participate.

information and advice available to me,”said Chet Bunnell, a regular teleconference participant. One of the best things someone with MS can do is simply gather information and find out how it affects them and what techniques work for them. “You have to be kind of a detective and figure all this stuff out,” Pat said. “The teleconferences really let you get the extra pieces without having to go to the doctor’s office. You get different insights and different viewpoints from different specialists.” Chet, a retired academic reference librarian, has a thirst for knowledge and even if a specific topic isn’t a prevalent issue in his life, he still enjoys learning about it. “It is all useful and valuable information whether I can apply it currently or not,” Chet said. “I may not have the symptom right now or immediately need the medications, but I will at least have the information when, or if, a change in my condition comes up.” He also looks forward to the teleconferences as a little something different. “I find them to be a nice break and diversion from my daily routine,” Chet said. “I take a break to learn something of value and hopefully of use in my daily life. I love learning new things and if they are useful to me on a regular basis, all the better.” During each one-hour teleconference, the featured speaker discusses the topic for 40-45 minutes, which allows time for specific questions from the listeners. “The speakers have been knowledgeable and good communicators,” Chet said. “The logistics have been excellent with only one failure when the host was suddenly lost, but we could still hear the speaker and the problem was quickly resolved. The company hosting the teleconference has been great with very helpful, friendly and courteous greeters. The teleconferences provide a little more human interaction, which is always a positive.”

1.800.344.4867

happenings Midwest Teleconference Series

Teleconference Registration

Mark your calendars for every second Monday of the month for the Midwest Teleconference Series. July through September’s topics are as follows:

Please mark the sessions in which you would like to participate:

Speaker: Mary Denise Hughes, MD Date: July 13, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of issues pertinent to African Americans with MS.

Sharing Your MS – Relationships and MS

Speaker: Sarah K. Wahl PhD Date: August 10, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of communication strategies used to strengthen relationships.

Beyond the Basics – Alternative and Complementary Therapies for MS

African Americans and MS Monday, July 13, 7-8 p.m.

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Sharing Your MS – Relationships and MS Monday, August 10, 7-8 p.m.

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Beyond the Basics – Alternative and Complementary Therapies for MS Monday, September 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.

Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440

Help the MS Society G

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., Teva Neuroscience and Wachovia.

GREEN

Would you prefer to receive our MS Connection in your inbox rather than your mailbox? Sign up today for an e-Newsletter by e-mailing the Chapter at gogreen@gatewaymssociety.org, and your name will be added to our cyber list. Thanks for helping us save printing, postage, and trees

www.gatewaymssociety.org

HAPPENINGS

African Americans and MS

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Gateway Area Chapter

Calendar Listings

HAPPENINGS

8 8 11 13 14 20 27

Research MS Cape Girardeau, MO Fitting Fitness In Teleconference Talk MS Open House New London, MO New Connections Social Gathering O’Fallon, MO Family Evening Columbia, MO Family Evening at the Ballpark, Southern Illinois Miners, Marion, IL Family Evening at the Ballpark, Gateway Grizzlies, Sauget, IL Family Evening at the Ballpark, River City Rascals, O’Fallon, MO

JULY 13

African Americans & MS Teleconference

AUGUST 10 29 29

Sharing Your MS - Relationships & MS Research MS Columbia, MO Research MS Carbondale, IL

SEPTEMBER 3 12

Bike MS: Express Scripts Gateway Getaway Ride 2009, Columbia, MO Beyond the Basics – Alternative and Complementary Therapies for MS John L. Trotter Research Program, St. Louis, MO

JUNE 6

New Connections Social Gathering South County, MO Bike MS: Express Scripts Gateway Getaway Ride 2009, Columbia, MO

OCTOBER 12 16 17 18 27 27

Talk MS Open House, Poplar Bluff, MO Family Weekend Touch of Nature Carbondale, IL Family Weekend Touch of Nature Carbondale, IL Family Weekend Touch of Nature Carbondale, IL Talk MS Open House, Litchfield, IL Talk MS Open House, Metro East, IL

SAVE THE DATE! Family WeekendTouch of Nature Be sure to save the date for Family Weekend-Touch of Nature on 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, Ill., Touch of Nature offers a secluded and accessible retreat from life’s pressures. Weekend activities include: g Accessible pontoon boat rides 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 Visit www.gatewaymssociety.org for further updates and registration details.

MARKETPLACE Permobile Electric WheelChair Fully equipped 2007 electric wheelchair. In good condition, needs new battery. Asking $3,000. Call Elsa in Brentwood, MO at (314) 918-8960. Pride Electric Scooter with charger Scooter with a navy blue seat and a charger. Great condition. Asking $200. Call Anne in Clayton, MO at (314) 863-8107. INVACARE POWER WHEELCHAIR In good condition. Purple, includes working batteries and charger. Asking $1,800 or best offer. Call Etta in Paris, MO at (660) 327-1078.

1.800.344.4867

happenings You Can Work It Out… with an MS Exercise Class at St. John’s Mercy Sports & Therapy

Class size is limited to six participants in order to ensure individualized attention. Classes covered by some insurance policies. For fee waiver information call 1-800-344-4867(option 2). To enroll, call Christina Moore at (314) 881-4200. This class consists of: g General education in appropriate forms of exercise g Strengthening and flexibility exercises g Balance and endurance training

Get Motivated. Get Moving.

of the Gateway Area Chapter, who helped start the fitness clubs says, “I would like to see each group get together at least one to two times a month and participate in a variety of activities.”

Fitness Club Leaders St. Charles, MO Sabrina Happel 636-233-7854 (nighttime activities leader) Subrinu2007@hotmail.com

The overall goal of the “fitness clubs” is to encourage socialization, health and wellness among people with MS. Exercise and recreation is more fun when you have others to do it with. For more information and to find out how to join or start a fitness club in your area please contact Kerry Adkins at the Chapter at 314781-9020.

Join an MS Fitness Club

Columbia MO Gail Cameron 573-999-0471 cameron1298@yahoo.com Exercise is important to everyone, but with the effects that sometimes come with MS, it can be hard to get moving. The National MS Society wants to help keep people living with MS moving and the newly created “fitness clubs” can help. Each “club” establishes its own goals. Kerry Adkins,

www.gatewaymssociety.org

HAPPENINGS

The MS Exercise Class at St. John’s Mercy Sports and Therapy was developed by Elissa Bradford, Physical Therapist with St. John’s Sports and Therapy, in conjunction with the West County MS Center. The class features Elissa Bradford and Nancy Dollenmeyer, physical therapists who have experience working specifically with people living with MS.

Gateway Area Chapter

TALK MS GROUPS

HAPPENINGS

MISSOURI Cape Girardeau

3rd Saturday, 10 am

Columbia

Call for Dates

Crystal City/Festus

2nd Tuesday, 1 pm

Fulton

Call for Dates

Jefferson City

3rd Monday, 6 pm

Moberly

TBA

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 TBA

Sharon (573) 332-8148 Deanna (573) 882-6767 Marlene (636) 464-2533 Sharon webradleys@yahoo.com Diana (573) 642-9234 Chris (573) 645-0130 clepper@mobankers.com This Talk MS Group is currently looking for a new facilitator. Please contact Allison at 314-446-4185 to learn more. Debby (573) 267-3365 mlrdsr@rallstech.com Tamra (573) 568-3912 cawalker@sbcglobal.net

2nd Monday, 7 pm 2nd Sunday, 2 pm 3rd Sunday, 3pm

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

Affton

1st Thursday, 7pm

Maryland Heights

Call for Dates

West County

2nd Tuesday, 7 pm

Perspectives on MS Networking Group (mid-30’s & under)

1st Saturday, 10 am

Weber Road Library Linda (314) 544-5623 4444 Weber Rd, St. Louis, MO 63123 DePaul Health Ctr, May Ctr- Conf. Rm C Kevin (314) 841-3755 12303 DePaul Dr., St. Louis, MO 63044 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

New London Poplar Bluff St. Charles West Plains

Call for Location

ST. LOUIS METRO

1.800.344.4867

happenings TALK MS GROUPS ILLINOIS Alton Belleville/ O’Fallon

Litchfield Metro East Mt. Vernon Southern Illinois

New group coming soon.

2nd Sunday, 2:30pm 2nd Tuesday, 7 pm

First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269 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

June 24, 7 pm Aug. 26, 7pm 2nd Thursday, 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

2nd Tuesday, 5pm

Please check gatewaymssociety.org for updates. Amy (618) 235-4226

HAPPENINGS

Granite City

TBA

Beth (618) 447-5456 Susan (217) 324-7106 susie57@consolidated.net Ruth (217) 999-8924 tuba66@frontier.net 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 Aug. 4 6pm St. John’s Mercy Medical Center 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. jsalacki@sbcglobal.net Michelle (314) 251-6400 Debbie (636) 579-0264 debrafriends@hotmail.com Penny or Patti (314) 652-4100 ext. 4523 patricia.noonan2@med.va.gov

NMSS Office Gateway Area Chapter Allison (800) 344-4867 1867 Lackland Hill Parkway, St. Louis, MO 63146 allison.harper@gatewaymssociety.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 our Talk MS are moving forward. Staff members from the Chapter will be attending to let you know about the programs and services offered by the Chapter.

New London, MO Monday, June 8 at 7 p.m. Ralls County Health Department 405 West, New London, MO 63459 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

www.gatewaymssociety.org

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q Name change or misspelled q Address change q Remove from mailing list q Received more than one copy q Please send me my MS Connection via e-mail. My e-mail address is: _____________________________ Living with MS

Read all about it in Society brochures Whether you’re recently diagnosed, or managing “an old friend” of a symptom, the Society offers brochures on a range of issues related to MS. These brochures are reviewed by experts in MS and regularly revised for the most accurate information possible. Some brochures updated in 2009 include: Living with MS; Multiple Sclerosis and Your Emotions; Research Directions in MS; Win-Win Approach to Reasonable Accommodations; Food for Thought: MS and Nutrition; A Guide for Caregivers; Solving Cognitive Problems; and Depression and Multiple Sclerosis. In addition, a number of brochures are now available in Spanish. Además, tenemos disponibles folletos en español.

Where to find You can read or download PDFs of Society brochures at nationalMSsociety.org/brochures. Or call 1-800-344-4867 for print copies. For easy searching, brochures are divided into eight categories: General Information, Newly Diagnosed, Employment Issues, Staying Well, Managing Specific Issues, Managing Major Changes, For Children & Teenagers and Información en Español. You can also download a PDF catalog with brief descriptions of all the publications the Society offers clients.

Extra! Extra! One brochure regularly updated with breaking news is Disease-Modifying Drugs. The online version (nationalMSsociety.org/DMD) includes the most recent information possible on the disease-modifying drugs Avonex, Betaseron, Copaxone, Novantrone, Rebif and Tysabri. The booklet covers how they are taken, their benefits, side effects, and how to pay for them. Check back regularly for new reports on DMDs.