MS Connection- Gateway Area Chapter Volume 5, Issue 4 by National Multiple Sclerosis Society, Gateway Area Chapter

MOVING TOWARD A WORLD FREE OF MS Volume 5 • Issue 4

Gateway Area Chapter

Get ACTIVE for MS

Taking Advocacy Engagement to the Next Level Everyone has a role in the government. Voting is one of the easiest ways to become involved, but it is only the beginning of the opportunities to become an engaged citizen.

Engagement begins with good information. Whether television, print sources, State Representative Tim Jones radio or the internet is your (left) and Team Kendra captain preference, there are countless Tina Grubbs became acquainted ways to educate yourself at the Walk MS event in Eureka. about the issues that affect you, your loved ones, and your community. Bolstered with good information, people become more skilled at communicating and supporting their opinions. If you become passionate about a topic or a set of issues, there are many ways to take that commitment to the next level. Here are just a few ideas:

Attend a meeting Many elected officials host town hall meetings, open to their constituents who want to discuss issues. Many meetings of governing bodies are open to the public and even have time set aside for questions and comments from the public.

Volunteer for your government Much government work is done by unpaid volunteers, serving on boards and commissions. Seek out opportunities for your skills and expertise to be put to good use. Dr. Michaele Penkoske, who has MS, currently serves on the St. Charles Citizens with Disabilities Advisory Board. “I was excited to become engaged and be part of a group whose mission is to make the lives of disabled citizens better, to bring them on par with citizens without disabilities, in terms of being able to enjoy lives in full participation of all that their community had to offer,” Penkoske said. Penkoske was very excited when the Board created “City of St. Charles Accessibility Guidebook for People With Disabilities,” a 117-page publication that includes information on accessible lodging, entertainment, dining, transportation, etc. in the St. Charles area. While serving on the Board, Penkoske has not only helped get some things done for people with disabilities, she’s also learned quite a bit. “I have learned about the courage and the selfless dedication of the disabled community,” Penkoske said. “Members of this Board have given me a window into the power of those who would leave the safety, convenience

INSIDE THIS ISSUE:

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Scraps into Donations Bike MS Cycles Back Page 9 Page 8

A Special Wedding Gift Page 14

Happenings Page 17

MS Connection

FROM PAGE 1 Get ACTIVE for MS and comfort of their homes and try to assure that others have the time and inclination, maybe you could become with disabilities of all sorts have full access to the resources part of the solution to issues you care about as an elected within a community that able-bodied people enjoy every office holder. day.” Make it personal Participate in campaigns Legislators and the everyday voter will probably be more If there is an issue or a candidate you believe in, get involved responsive when they are told how a bill can make a as a volunteer or a donor. real difference in the lives of people living with MS or how important it is to ensure that public buildings have Join groups that work on issues you believe in automatic doors. It’s important when you get their ear, to The MS Society is always welcoming new members to our have a compelling story to tell. Action Alert. Sign up on the web at http://capwiz.com/ nmss/mlm/signup/ to get updates on federal and state Jim Brasfield, Professor of Management and Political Science policy issues. at Webster University, served as an alderman in Crestwood in St. Louis County from 1978-1996 and was mayor from Visit and get to know your elected officials 1996-2002. He is also on the Chapter’s legislative committee. Traveling near the state capitol sometime soon? Call your state representative and ask for an appointment. Some “Once you get the contact with the legislator, part of it is Walk MS participants invite their local elected officials to telling the story,” Brasfield said. “That personalizing of a story join their Walk MS teams. If you cordially reach out to your helps legislators understand the impact of the disease.” officials, you will often find that they are eager to know you, too. If you can give your audience a real example of how a piece of legislature can make a real difference, the better the Tina Grubbs, captain of Team Kendra, befriended State chance that your audience will respond. Representative Tim Jones at Walk MS in Eureka. “The legislator doesn’t really have a sense of what MS is “I ask anybody I come in contact with if they’d like to join unless they’re told a story of why this would be important us or donate to our team,” Grubbs said. “It’s just a habit of and how spending a few thousand dollars to help renovate something I do. I didn’t even know his position at that time. a home would help that person stay out of a nursing home,” I just approached him.” Brasfield said. “Legislators always like to hear personal stories and examples are a powerful way of getting the After chatting for a bit and giving him a Team Kendra T-shirt, point across as to why a particular piece of legislature is Representative Jones told Grubbs to email him, which she important.” did, and he made a donation to the team. He also came back to the walk the next year. Not everyone can serve on a board, run for office or take part in campaigns. But everyone can get active for MS. “I get mailings from him all the time inviting me to things,” Grubbs said. “I think he likes to support the event. He said a “Not everyone with MS will have the ability to be involved few words at it last year. He’s a nice guy.” with advocacy,” Penkoske said. “People with the ability and interest might be well to start by becoming involved By engaging Representative Jones, Grubbs made him feel in the Gateway Area Chapter. The Chapter is an excellent more welcome and helped raise MS awareness for a local resource for learning about legislative issues of relevance to politician. people with disabilities. The more people become involved, the louder the voice that legislators might hear on issues Speak out relevant to potentially improving the lives of handicapped Whether it’s through a letter to the editor or by participating people. “ in a chat room, there are lots of ways to share your point of view with others. Everyone has a place in government, but far too many of us do not exercise that right. To have the concerns of people Run for office with MS reflected in policy decisions, people affected by MS For every individual serving in high office in this country, and those who love someone living with the disease must there are literally thousands serving on city councils, school be active and engaged. Your story, your voice, and your boards, and other local institutions of government. If you action can be the catalyst for the change you seek. 2

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Coalition moves to end the Medicare wait

MS activists and others in the disability rights movement changed the course of history when they helped to push the ADA Amendments Act through Congress. President Bush signed the legislation in September 2008.

In November 2008, more than 75 organizations, including the National MS Society, launched a national campaign to end the two-year waiting period for health-care coverage through Medicare that follows a person’s initial approval for Social Security Disability Insurance.

The Act became effective January 1, 2009, bringing millions of people back under the protection of the Americans with Disabilities Act of 1990 (ADA).

How the ADA was eroded

As originally written, the ADA was designed to ensure that all people with disabilities could receive reasonable accommodations in the workplace. But over time, court rulings narrowed the definition of “disability” to exclude those who could “control their symptoms.” This included people with MS responding well to their disease-modifying drug. Sen. Tom Harkin, D-Iowa, the chief sponsor of the ADA Amendments Act, described the situation: “The more successful a person is at coping with a disability, the more likely the court will find that they are no longer disabled and therefore no longer covered under the ADA.” The new Act reverses four Supreme Court decisions that had eroded ADA coverage for people with MS and other conditions, including diabetes and epilepsy, that are controlled by medication, are episodic and/or do not always severely restrict major life activities.

New protections

Starting this January, courts may not consider “mitigating measures” such as prescription drugs, hearing aids or artificial limbs. The new law says “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” To learn more about this historic bill, and the protections it provides, visit adabill.com.

advocacy

Amendment restoring ADA protections passed

An unjustifiable delay

The newly formed Coalition to End the Two-Year Wait released a letter to members of Congress, urging them to end the “unjustifiable delay” for Medicare. The coalition declared its support for the Ending the Medicare Disability Waiting Period Act, sponsored by Sen. Jeff Bingaman (NM) and Rep. Gene Green (Tex.). Green attended the kickoff event on November 12, 2008. When the 111th Congress convened this January, the bill was reintroduced in both the House CONTINUED ON PAGE 4

Chapter Needs Illinois Residents to Get Active with MS Illinois MS Action Day will take place March 24 and 25, 2009 in Springfield, Illinois. The Gateway Area and Greater Illinois Chapters collaborate for this program. The first day is a conference at the Springfield Hilton, where participants will learn about the political process, the key political issues affecting people living with MS in Illinois, and tips for speaking with and building relationships with legislators. The second day is spent in groups at the capitol, speaking with legislators about our issues and asking them for support. We are currently seeking volunteers to participate in this inspiring program. Volunteers must: 1. live in Illinois. 2. have MS or be close to someone with MS. 3. be articulate and willing to speak with state legislators and/or their staff. There are two training teleconferences that take place prior to MS Action Day. Meals and lodging are provided. If you are interested in volunteering, please contact Stephanie Walgamott, stephanie.walgamott@gatewaymssociety.org. TOLL FREE NUMBER 1 800 344 4867

research

Activists secure $5 million for MS research MS activists made history last fall when they moved Congress to approve $5 million for MS research through the Congressionally Directed Medical Research Programs (CDMRP). This is the first time that MS has received a line item allocation under CDMRP, which is funded through the Department of Defense (DOD).

Activism victory

The movement to obtain MS research funds from the DOD began in late 2006 when activists collected more than 100,000 signatures. Activists participated in hundreds of congressional meetings, took the case to the media and town hall forums, and collaborated with members of the American Academy of Neurology, the Paralyzed Veterans of America, United Spinal, AMVETS, the Vietnam Veterans of America, and the Disabled American Veterans to petition Congress. FROM PAGE 3

Advocacy and Senate. The bill had wide support during the 110th Congress with 103 co-sponsors in the House and 23 in the Senate.

“Sick and uninsured”

In a statement for the coalition, Yvonne Brown described her long and awful journey to get healthcare coverage after her diagnosis with MS in 2000. “I had nearly 40 unfilled prescriptions that would have helped treat my MS and associated symptoms,” she said. “I would take one pill every other day rather than two pills twice a day to stretch my supply. With my disease-modifying drug, I would administer that injection every other week instead of once a week as prescribed. Because of this constant worry, I developed severe hives, all due to the stress of

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unpaid medical bills, being homeless, being sick and uninsured.”

Too high a cost

According to the coalition, 1.5 million people are waiting for Medicare coverage. Brown is now insured through Medicare. But, she said, “I struggle daily with the devastating financial effects and health consequences of living through the Medicare two-year wait period.”

Get moving

To learn more about the coalition and get involved in MS advocacy, visit nationalMSsociety.org/ advocacy, where you can sign up to receive news and updates on health policies, help find solutions to MS issues, and take action on legislation that matters.

Patient Question:

Outside of medications, exercise and diet, what types of things can I do to live better with multiple sclerosis?

Response:

An important tool to reach this goal is learning to become a better advocate for your own healthcare. As our medical system gets more complicated and expensive, figuring out the best way to get what you need to live well with MS can be challenging. Here are some strategies that may be helpful:

Health Insurance Research your benefits. If you have different health insurance options through your employer or spouse’s employer, determine coverage for MRI scans and injectable MS medications prior to selecting a plan in open enrollment periods. Challenge denials of coverage. Sometimes initially denied treatments can be approved with the right “prior authorization” paperwork filled out by your doctor’s office. With the current economic problems, more and more people with MS are losing jobs and healthcare insurance. In addition, many people were already uninsured. You can still get access to treatment without insurance. Most of the pharmaceutical companies making MS medications provide treatment to uninsured or under insured patients often with low co-pays or sometimes free of charge. A fund is also available to assist in MRI costs. If you are paying out-of-pocket for physician visits, many doctors are willing to reduce the cost of office visits.

Direct Care Develop a partnership with your neurologist or other healthcare provider. Make the most of your appointments. Make a list of the top few things you

If you have a question or concern you would like an MS expert to address in this column please email it to

movement@gatewaymssociety.org.

g g g

Dr. Barry Singer, MD, director of the MS Center for Innovations in Care at the Missouri Baptist Medical Center www.mslivingwell.org

MS CONNECTION

Ask The Professional

want to make sure you discuss. Bringing a friend or family member can help if you have someone else involved in your care or you just need an extra set of ears. Bring your MRI films if you want to review them with your doctor. Be on time or even early for appointments to maximize office visits. Call your healthcare provider if you are having problems such as MS attacks.

Everyday Life Explore options to change your work environment, there may be accommodations available to you. Get a disability parking tag if needed. Fill out Family and Medical Leave Act paperwork if you anticipate you might miss some work days. Make your home more accessible. Check out if you qualify for a scooter or electric wheelchair to improve your mobility. How about hand controls for your car? MS can clearly be challenging. But challenges can be tackled and solutions can be found. Become a better advocate for your needs and live 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 healthcare 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. TOLL FREE NUMBER 1 800 344 4867

VOLUNTEER

Through The Eyes of Volunteers:

Rebecca and Bill Carroll, Bike MS Volunteers Thy Huskey, Advocacy Volunteer My husband came home in the summer of 1999 stating he found a bike ride he thought would be fun. He and his friends were going to bike from Troy to Mexico, Mo. and back over the course of two days to raise money for MS. My first thought was I would have a husband-free weekend. Little did I know how much I would come to love this weekend.

When the bike event came around for 2000, Bill talked me into going along as a volunteer. I asked the Gateway Area Chapter what help was needed and was told that they needed drivers for their SAG (support and gear) wagons. Bill assured me, this would be an easy position, all I had to do was drive a van, similar to our Safari, and pick up stranded or tired cyclists and transport them to the next rest stop. I arrived the morning of the event to find a 15-passenger cargo van waiting for me. I had driven a van, but not one this big! I was assigned a radio operator and away we went. That first weekend was a blur. By 2001, I was an old pro. I drove with confidence. All of that changed in July of 2002 with one phone call from the NMSS office. My radio operator in 2001 had mentioned that I would be a good candidate for getting a radio license and being “on the air.” He ended up mentioning me to a member of his local radio club, who happened to be the chairman of the Bike MS logistics committee, who wanted me to run a radio! Well, I studied for my entire vacation, Bill and I tested and passed. The license came in the mail, I borrowed a radio and drove. I was so nervous. Everything happens so fast on the ride. By the spring of 2003, Bill and I decided to contact the volunteer coordinator to see if there were other opportunities for us to help out. That’s when we were drafted. The Bike MS logistics committee asked us CONTINUED ON PAGE 7

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avenue to help people.

I was recently asked why I advocate on behalf of issues affecting multiple sclerosis. The answer is simple: My experience has provided me with a unique perspective and advocating has turned out to be for me -- like becoming a doctor, an

I was diagnosed with MS about 18 years ago when, like so many others with the disease, I was in the “prime” of my life. I was in my final year of college and had been accepted into medical school. In some ways, I was thankful to finally have a diagnosis that could explain the various strange symptoms I had experienced but, mostly, MS only brought me more questions and the inevitable uncertainties about the future that come with this disease. There were many times that I felt powerless and afraid. But, with youth comes the feeling of invincibility. Despite the diagnosis, I headed off to medical school, and was able to complete it with the wonderful support of my doctors, friends, and family. And their encouragement, strength and love helped me complete school, as well as residency training in the field of Physical Medicine and Rehabilitation four years later. Through it all, with the assistance of my doctors, colleagues, and the National MS Society, I empowered myself by increasing my own knowledge about MS – the disease, its devastating impact on patients, and the new therapies that were developing at the time. And, as I gained knowledge and more support, the feelings of helplessness and fear of uncertainty that had enveloped me when I was diagnosed slowly cleared away. Once again, I had the courage and strength again to pursue my life and my dreams. Certainly, MS has posed its challenges to my path to becoming a doctor and working as a physician. But I also think that it has given me invaluable wisdom and experience As strange as this sounds, I truly believe that having MS has made me a bet-

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Some of you may have known her, some of you not. Our Mom, Dolores Knoblock, was lovingly known as “Granny on the Spot”. She was the littlewhite-hairedladywhodiligently wiped down the Johnny on the Spots at our family’s “Pirate” Bike MS rest stop for the past four years. This year she was diagnosed with kidney cancer and at the Bike MS: Express Scripts Gateway Getaway Ride this September, she did not have the strength to do her “job.” She actually

FROM PAGE 6 Rebecca and Bill Carroll to come help plan the rest stops. By 2004 I was planning rest stops and Bill was working with the radio communications team to make sure we had enough radio volunteers and radio coverage for the event.

The Bike MS: Gateway Getaway Ride 2008 was our sixth year on the logistics committee. For the 2009 ride, the committee started in February and will end in October. We have met so many wonderful people, staff, volunteers, and riders. It is fun to see young riders with their parents year after year and watch them grow. My own children were so little when we started working with this event. In 2008 my boys became radio operators and worked with us! The event wasn’t even over and they were planning to be back next year. Volunteering can be done by anyone, with any background! There are no special skills involved. More than 700 volunteers were needed to put on the Bike MS: Express Scripts Gateway Getaway Ride 2008. Even more will be needed this year. I challenge each of you, to make this a family event. If you are riding, bring the rest of the family along to volunteer. Make it an adventure. You never know what might happen.

volunteer

Remembering ‘Granny on the Spot’ was upset that we took her duty away from her this year when we held our annual family meeting to prepare for the event. This year she sat and attempted to cheer on cyclists whom she thought of so affectionately. On October 28, your “Granny on the Spot” passed away. She touched many lives in her lifetime…hopefully some of you were the lucky ones. – The Knoblock Family

FROM PAGE 6 Thy Huskey ter doctor. MS was not exactly an ideal “class” to endure during medical school, but the reality is that being a patient has taught me so much more than I would have learned from just being in the classroom.

Today, I care for patients and teach at Washington University School of Medicine, where I have the opportunity to share my experiences with aspiring young physicians. I believe that my experience as a patient helps me to teach them the compassion necessary to become a good doctor. And, I find myself being thankful for that ability almost every day. Being an advocate for a cause in which I so strongly believe in is just another way of being able to communicate my experience to others and to empower myself by being heard. I believe it would be a waste if I could not share my experiences and knowledge with others – whether they are colleagues, patients, students, or legislators. Through the National MS Society, I have had the opportunity to speak out to our decision-makers about the many issues that affect people living with MS. Because I have lived life “on both sides of the stethoscope”, I think I have a unique perspective on these issues. But those issues – healthcare, employment, financial, social, and personal issues – are perhaps only the tip of the iceberg for someone living with a chronic, progressive, neurological disease such as ours. I want to share my thoughts and opinions with legislators at a state level and a national level to assure that laws are made to properly safeguard my future and others with MS. I am so thankful to the MS Society for including me in their legislative efforts in Jefferson City and in Washington D.C. The diagnosis of MS may have irreparably devastated and emotionally crippled me years ago; but, now I am empowered to speak out and to move again towards a better future for life with MS. TOLL FREE NUMBER 1 800 344 4867

fundraising

Put “Fun” in Fundraising with Your Favorite Hobbies Team Mission Max Turns ‘Scraps’ into Donations Their latest scrapbooking fundraiser in January drew a crowd of 140 participants at the Immaculate Conception School of Dardenne Prairie, MO with their hands full of their favorite scrapbooking material. As a special surprise, Timme arranged for a few scrapbook vendors like “Creative Memories Consultant” and “Stamp-N-Up Consultant” to set up a table with scrapbooking supplies for sale. Scrapbooking events or ‘crops’ are great opportunities to preserve memories and create new ones in a social Fundraising for you or your team’s upcoming MS event setting. doesn’t have to be stressful or dull. Try thinking of a fundraiser that allows you to incorporate one of your “Going to a crop is a great way to catch up, share ideas, favorite hobbies. and enjoy a little me time,” Timme said. “It’s a nice time for families to spend together and builds camaraderie for our Long-time Walk MS and Challenge Walk MS participant team.” Gina Timme, took her favorite hobby of scrapbooking and turned it into a successful fundraising tool for the Timme has been walking for the National MS Society for upcoming Challenge Walk MS Dean Team Automotive more than 10 years. Her current team, Team Mission Max, Walk 2009. came together out of care and concern for her friend Tonya who lives with MS. She has been amazed at how She wanted to think of a low-cost way to raise money much people donate. as well as something that would entice participants to keep coming back to their event. As a long-time fan of “It’s just a matter of asking,” she said. “I ask wherever I scrapbooking, Timme thought that would be the perfect go, especially at restaurants when I’m dining. You’d be way to get large groups of people involved, as well as keep surprised. You can’t be afraid to ask.” fundraising enjoyable for her team. For $45 per person, each participant gets two meals, has a chance to win prizes, and brings all of their scrapbooking supplies for several hours of entertainment. In preparation for the fundraisier, Timme emails scrapbooking manufacturers requesting material to be donated. She usually gets about a five percent response rate and uses the donations for an hourly prize or goodie bag giveaways at each event. While five percent doesn’t sound like much, the material is free and a great incentive for the attendees. To make sure everyone is well fed, team members bring some type of snack or veggie tray. Many of their paper products are donated by places like McDonald’s or QuikTrip. This year, Timme sent letters to several restaurants and received gift cards to place inside of their goodie-bag give-aways.

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Timme and Team Mission Max, plan to continue their creative fundraising activities with a washers tournament and barbecue later in the year. She doesn’t plan to slow down any time soon. “Doing the Challenge Walk itself is such a life-changing experience,” Timme says. “It is so physically challenging, but I’m healthy, and I walk alongside so many people who have MS and continue to walk no matter what. My feet are blistered and hurt and every muscle in my body aches, but these are things that will go away in a week or so. Those living with MS can’t say that. They live with it everyday and it just doesn’t go away.”

Saturday, April 4 Carbondale, Illinois SIUC Campus Reg: 10 a.m. Start: 11 a.m.

Sunday, April 19 Clayton, Missouri Shaw Park Reg: 11 a.m. Start: Noon

Sunday, April 19 Cape Girardeau, Missouri Capaha Park Reg: Noon Start: 1 p.m.

Saturday, April 25 Millstadt, Illinois Municipal Park Reg: 11 a.m. Start: Noon

Saturday, April 18 Arnold, Missouri Arnold City Park Reg: 11 a.m. Start: Noon

Sunday, April 19 Edwardsville, Illinois Township Park Reg: 11 a.m. Start: Noon

Thursday, April 23 Steppin’ Out for MS Night Walk St. Louis, Missouri Reg: 5 p.m. Start: 6 p.m.

Saturday, May 2 River Bend, Illinois Glazebrook Park Reg: 10 a.m. Start: 10:30 a.m.

Saturday, April 18 Eureka, Missouri Kircher Park Reg: 11 a.m. Start: Noon

Sunday, April 19 St. Peters, Missouri Laurel Park Reg: 11 a.m. Start: Noon

Saturday, April 25 Columbia, Missouri Cosmopolitan Park Reg: 11 a.m. Start: Noon

Saturday, May 2 Troy, Missouri Cuivre River State Park Reg.: 10 a.m. Start: 11 a.m.

events

Come Walk With Us

walk Gateway Area Walk 2009 presented by

Are you up for the Challenge?

Walk 2009

Get ready for an experience unlike all others! The Challenge Walk MS Dean Team Automotive Walk 2009 will be an unforgettable journey May 2931 in St. Louis, MO. The brand-new route takes walkers on a 3-day, 50mile journey. The terrain is varied, but the National MS Society supports walkers every step of the way. At the overnight site, celebrate your daily accomplishments and enjoy inspirational entertainment, relaxing massages and hearty meals. What a weekend! In a few challenging, but incredibly rewarding days, you’ll be taking important steps to help create a world free of MS. Go to www.gatewayMSchallenge.org to register or volunteer.

Bike MS Cycles Back to Celebrate 25th Anniversary Boone County Fairgrounds Offers More Friendly, Flatter Terrain In honor of the 25th anniversary of Bike MS: Express Scripts Gateway Getaway Ride on September 12-13, the Chapter is moving the event headquarters to the Boone County Fairgrounds in Columbia, Mo. The location is not brand new, as the Chapter held Bike MS there in 2003 and earlier years. The Fairgrounds are a couple miles north of I-70 off MO-63 on the eastern side of Columbia. The Chapter listened to cyclists’ feedback on how to continue to provide the highest-quality event possible while raising funds to help create a world free of MS. Using the Boone County Fairgrounds as the start, finish and overnight location

for the Bike MS: Express Scripts Gateway Getaway Ride 2009 will improve the event and provide cyclists several features including: g New 40-, 75- and 100-mile routes highlighting the quaint lifestyle of Amish country. A g flatter, more spacious overnight site allowing more room for team tents and camping. g A new layout providing a view of finish-line festivities from the team tent and beer garden areas. g Additional access to electricity for team tents and camping. g More permanent rest rooms at the overnight site. g Additional food options. g More covered pavilions giving cyclists and volunteers additional shaded locations to enjoy the event. g Easier access to hotels and restaurants and easier access from the St. Louis metro area. Register at www.gatewaymsbikeride.org. TOLL FREE NUMBER 1 800 344 4867

Programs & Services

Just Hitting Her Prime Late-Blooming Artist Makes Debut at Local Gallery

A diagnosis of multiple sclerosis can certainly be a lifechanging event. Marilyn MacKris, diagnosed in 1982, has never been stopped by her MS and has even found an unexpected career. “I am not defined by my disability, and neither am I destined to its limitations,” MacKris said. “Experiencing MS, as well as other difficult life circumstances, has just forced me to find alternatives to provide meaning in my life. Boredom is my enemy!” In 2005, MacKris found a new way to conquer that enemy. At the age of 67, she signed up for a painting class at the St. Louis Art Museum, taught by Chinese brush painting artist Li Dongfeng. The artist and the student became friends and MacKris began collecting Chinese brush painting books, which she studied and copied. “I have always loved art,” MacKris said. “As a child, I loved drawing and often copied book illustrations or drew objects in my home.” While MacKris considers herself a lifelong lover of the arts and a perpetual student of life, the 2005 class led to her first serious attempts to study the craft. MacKris entered three of her pastels in a show at the Creative Art Gallery in South St. Louis. The pastels gained the attention of the gallery’s owner, Mary Ellen Shortland. She asked MacKris to bring in more of her work to be displayed in the gallery. “I am indebted to Mary Ellen and those who have bought my paintings and given me commissions,” MacKris said. For MacKris, becoming a working artist at the age of 70 feels like a dream come true. “There were always priorities that intruded on my path to being an artist,” MacKris said. “After meeting Li and doing a few classes with him, I realized art had to be my top priority. I dropped out of every commitment I had, changed my kitchen into an art

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Marilyn MacKris, who was diagnosed with MS in 1982, has found a new career with her artwork.

studio, and began the daily discipline of painting.” In addition to enjoying her personal renaissance, MacKris is happy to report that her MS symptoms are currently under control. But despite this respite, MacKris continues to push through chronic back pain unrelated to MS. She also recalls periods when her MS symptoms were severe and constant. “I did what I could, despite the limitations,” says MacKris, who stayed active with volunteer work and adult education (both as a student and a teacher). MacKris also continued pursuing her passion for the arts and culture through travel, visiting China, Switzerland, and various North American regions. While traveling in a wheelchair can be difficult, MacKris makes it work. “I’ve had ‘walking’ tours of Portland, New York City, Montreal, and the California Bay Area all from a wheelchair,” says MacKris. “Sometimes there have been real difficulties, but I have found there is always a way. As a disabled person, I come in contact with people who have the choice to be kind or to look the other way. Overwhelmingly I find kind people who reach out from their comfort zones to help me. I see that as a gift - not only to me, but to them as well.” MacKris admits there were dark times, too, when she struggled to understand and accept life’s challenges. But there are choices on how to handle those challenges. “It is our choice to see and embrace opportunities and feel the joy of being alive, despite circumstances we would not have chosen,” MacKris said. “Live your life with acceptance and joy!” You can see MacKris’ work at marilynmackrisart.com and you can reach her by email at mmackris2002@yahoo.com.

When approached about being a part of the Chapter’s inaugural Women On the Move Luncheon, it was a nobrainer for Karen Carroll. “I loved it from the very beginning,” said Carroll, the volunteer chair of the Women On the Move Luncheon committee. “You have to pick and choose those things that you want to do on a yearly basis. I really felt that this was something I wanted to commit my time and effort to.” The Women on the Move Luncheon is a nationwide education and fundraising campaign founded in 1999. Each year more than 20 chapters host Women on the Move (WOM) Luncheons to educate communities about MS and fundraise. The Chapter’s inaugural WOM Luncheon will be held April 23 at the Four Seasons Hotel in downtown St. Louis with guest speaker Sue Thomas. Sue is an inspirational speaker who lives with MS. At just 18 months old, she suddenly lost her hearing but went on to achieve. She became the youngest Ohio State freestyle figure-skating champion at the age of 7. She also became the first deaf person to work as an undercover investigator as a lip reader for the Federal Bureau of Investigation and was the inspiration for the TV series Sue Thomas: FBEYE. “I’ve gone from being the FBI’s secret weapon to being the weapon to destroy MS,” Thomas said. Carroll is certainly no rookie when it comes to MS or being part of a new fundraising campaign for the Gateway Area Chapter. Her father had MS and Carroll helped establish the Chapter’s Corporate Achiever campaign as part of its inaugural class in the early 1990s. All guests must register and pay the minimum $75 donation in advance. Guests may also call the Chapter at 800.344.4867 and register over the phone with a credit card. This is highly recommended if you are registering several people at once. For more information go to www.gatewaymssociety.org, click on the “Women on the Move Luncheon” tab.

Sue Thomas will be the featured speaker at the Chapter’s inaugural Women On the Move Luncheon April 23 at the Four Seasons Hotel in downtown St. Louis.

“I was in the broadcast business and we created a lot of publicity for Corporate Achievers and worked out the relationship with the St. Louis Business Journal,” Carroll said. “I have also been personally touched by MS. I have done a lot of charity work in my life but the Chapter here in St. Louis of the National MS Society is incredibly focused, with a great percentage of the money raised going directly to programs and research.” The luncheon will raise funds and awareness for MS and recognize an honoree with the Woman of Courage Award that will be presented at the luncheon. “Women On the Move is something that has been done in other cities and it’s an empowering way to support women in moving toward a world free of MS,” Carroll said. “MS primarily attacks women, and the goal is to create additional awareness and recognize a special woman living with MS or an MS caregiver. We’re already well on our way.” “This is for those women who want to be involved who may not want to participate in a walk or aren’t into biking, but who are very busy and active and can more easily attend a lunch,” Carroll said. “So this will offer us a new venue for a new group of people who in the past have not been involved with the MS Society.” And just as the Corporate Achievers program is still going strong, Carroll sees a bright future for the WOM Luncheon. “I think it’s something that will continue to grow,” she said. “In other cities they’re on their 20th year and they have all continued to grow. I believe St. Louis is a philanthropic city and we will support this worthy cause.”

TOLL FREE NUMBER 1 800 344 4867 11

Events

A Luncheon That Feeds Awareness

Events

Chapter Honors Its Brightest at Night of A 1000 Stars On January 15, the Chapter held its annual “Night of A Thousand Stars” Volunteer Recognition Dinner at the Sheraton Hotel at Westport Plaza Lakeside Chalet. Kristen Cornett, “News 4 St. Louis” meteorologist, emceed the event. The Chapter honored its Annual Achievement Award Recipients, Pathligher Award Winners and Mission Possible Honorees.

2008 Annual Achievement Awards Mother of the Year – Julie Stanglein Her sister, Jennifer Hope, nominated Julie Stanglein of St. Peters, Missouri for this honor. Stanglein is a mom who has chosen to put her career as a social worker on hold in order to give priority to supporting her family’s emotional and social Mother of the Year needs, through volunteering in Julie Stanglein and her kids’ school library, helping her family to lead her son’s scout den, teaching Sunday School and Vacation Bible School and cheering along the sidelines at soccer and softball games. Stanglein does all of this while living with MS. She is also a daughter who has expanded her own home to include an apartment for her father, who has lived with MS for almost 20 years, in order to sustain as much independence for him as possible. She is a teambuilder, who formed TEAM Possible, and participated in Walk MS, Challenge Walk MS and Bike MS. This year, Hope thought Stanglein deserved to be recognized for her past efforts, and celebrated for continuing to make a difference in her family, her community and on behalf of the many others who face the same challenges that come from MS. Father of the Year – Craig Snethen Snethen and his wife, Karen, both work for the Fulton School District and have Father of the Year two children, Craig Snethen and his family Andrew and Rachel, ages 14 and 12. Craig Snethen was diagnosed with MS in 1993, but doesn’t let that stop him from being a great father, husband, and supporter of the National MS Society. Snethen has raised over $10,000 through his participation in Bike MS. He also serves as a speaker for the Chapter at a variety of events, is a member of the Fulton Talk MS group and has served on the planning committee for Bike MS.

JOIN THE MOVEMENT: gatewayMSsociety.org

Individual of the Year – Dr. Keith Snavely Dr. Keith Snavely is a favorite among students Chapter President Phyllis Robsham, and faculty at Individual of the Year Dr. Keith Snavely Southern Illinois and Chair of the Board of Trustees University in Helmut Starr Carbondale, IL. Kind hearted, thoughtful, and warm are adjectives that come to many people’s lips when they speak of Dr. Snavely. His students were so inspired by him, that they started a Walk MS event on campus last year and raised over $10,000. Dr. Snavely is an outstanding example of what one can accomplish with a positive attitude, acceptance of one’s condition and sheer determination.

Unsung Heroes of the Year – Dale Pendleton and Sarah, Hannah and Mary Berg Dale Pendelton, of St. Charles, MO, made Chapter President Phyllis Robsham, it clear to everyone Unsung Hero Dale Pendleton and around that when it became apparent that Chair of the Board of Trustees MS was something Helmut Starr that Dena, his wife, was going to face, that they were going to do it together. Pendelton reorganized his life for her. He always put her and their daughter, Morgan, first. Dale also made sure Dena was included in everything they did. Pendelton has also participated in Bike MS for years, with his wife as his inspiration. Sarah, Hannah and Mary Berg of Bel Nor, MO, are an inspiration to young and old. Sarah, 20, Hannah, 17 and Mary, 14 have grown up seeing their mom deal Unsung Heroes Hannah, with the challenges MS can present. Their mom, Emma, Mary and Sarah Berg was diagnosed when Sarah was in grade school. Emma has been in a wheelchair since that time and is now bed-ridden. The girls lost their father in 2001 to cardiac disease. They live with their aunt Mary Ann, Emma’s primary caregiver. But Mary Ann is the first to tell everyone that the girls are better caregivers than anyone. They understand their mom’s MS and know when something is not right. They feed her, sing to her and sit and tell her about their days. As Mary Ann said, “I’m amazed at them. They have come through everything with smiles on their faces.”

Employer of the Year – Holland Construction Services, Inc. Jim Riess, a cost estimator for Holland Construction, was diagnosed with MS in 2003. The MS affected his hands and arms Jim Riess and Bruce and as each day passed, Riess Holland of Employer saw that his ability to use his hands and fingers was going of the Year Holland away. When Riess approached Construction Bruce Holland and explained to him what was going on, Holland’s only reaction was, “We need your talents and your brain. We can find someone else to be your hands for you.” And that’s exactly what they did. Riess had someone sit side-by-side with him for five weeks and Riess verbally explained to him what needed to be done to get the job completed. “I am the only employee in our firm that has MS,” Riess said. “Anything in the way of different equipment to assist me in my job was never a problem with Bruce. It was Bruce’s wisdom that saw past the physical disabilities of MS to acknowledge the benefits of my mental abilities and how to continue to harvest that gift.”

Pathlighter Awards

Pathlighter Awards honor volunteers who have provided at least three to five years of service to the Chapter. These extraordinary volunteers are some of the finest examples of true stars who are blazing a path to create a world free of MS. Programs Pathlighter Susan Leach Health Professional Pathlighter Dr. Robert Naismith General Community Pathlighter Brenda Bender Development Pathlighter Bernie Dickneite Advocacy Pathlighter Leann Chilton

Chair of the Board of Trustees Helmut Starr presents Dennis Phillips with an NMSS baseball cap. Phillips, who placed third at the 2008 World Series of Poker® World Series, was recognized for raising more than $19,000 for the Chapter by selling a logo sponsorship on his jersey through eBay.

The Chapter honored 52 individuals and three third-party events that earned Mission Possible recognition in 2008 for raising $1 for every person in the area living with MS. TOLL FREE NUMBER 1 800 344 4867 13

EVENTS

Caregiver of the Year – Matthew Rider “I just don’t know how to thank him for everything he has done,” said Matthew Rider’s wife Melissa. Melissa was diagnosed with MS over two years ago, and Matthew Caregiver of the Year has been by her side every Matthew Rider and his step of the way. There have wife Melissa been times when Melissa couldn’t stand on her own two legs and Matthew has carried her from room to room. He has done all of this while battling his own health problems, and ultimately going through cancer treatment. He also helped take care of his father, when he was battling cancer as well. Melissa said Matthew has done all of this with strength unlike anything she has ever seen.

DONOR

A Wedding Gift for More Than Just the Bride and Groom The bride and groom will always remember their wedding day. But the bride and groom can also create a wedding that will be remembered by all and truly make a difference. On May 24 of last year Sarah and Shep Hickey decided that instead of leaving a traditional wedding favor behind for their guests, with the help of Sarah’s parents, Bob and Neela Kottmeier, they made a donation to the National MS Society. The idea to make a donation in lieu of wedding favors came about when Sarah and Shep had gone to another couple’s wedding where the couple decided that they would rather donate to a charity than leave behind the traditional goodie for their guests. After attending the wedding, the then engaged couple shared the idea with Sarah’s parents, who were delighted to make such a contribution.

Sarah and Shep Hickey found a creative way to give to the National MS Society and raise awareness for MS. Instead of leaving wedding favors for their guests, Sarah’s parents made a donation to the Chapter and a card was left at each place setting explaining the gesture.

and are usually forgotten about afterwards. This attached an extra meaning to them and made them more memorable.”

“I was excited when Sarah came up with this idea,” Bob Kottmeier, Sarah’s father, said. “It’s a cause that I have a personal attachment to because of Sarah’s diagnosis in 2006. It was an exciting way to channel our funds as opposed to purchasing the typical favor.”

There are several ways you can donate to the MS Society. Some of our most popular ways are through a one-time donation, end of year gift, stock transfer, or through events like Bike MS, Challenge Walk MS or Walk MS or campaigns like Corporate Achievers and the Women on the Move Luncheon.

“It’s just a great way to donate,” Sarah said. “It’s a great cause and hopefully it can lead to a cure or perhaps some type of oral medicine that is easy to take.”

While these methods help to move toward a world free of MS, try to think of other creative ways to give that may work best with your lifestyle.

At Sarah and Shep’s nuptials, they mentioned their decision to donate in lieu of wedding favors in their program and left a reminder card at each guest’s place setting. While she wasn’t sure if everyone noticed the missing favors at first, she can remember several of her parents’ friends commenting on what a great and easy way it was to contribute to a good cause.

In the case of Sarah and Shep, as well as her parents Bob and Neela, their creative donation helps us fund research and support programs and services that the Gateway Area Chapter provides to 6,000 people in our area living with MS. Sarah and Shep not only found a way to donate, but they also raised awareness of MS to their friends and family.

“Everybody knows Sarah’s situation,” Bob said. “I think all the guests were really pleased at the idea to donate instead of offering favors. Sometimes the wedding favors are just a typical thing to give

For more information on ways to give to the MS Society and other inspiring ideas, please visit our website at www.gatewayMSsociety.org.

JOIN THE MOVEMENT: gatewayMSsociety.org

MS CONNECTION

Smart tax prep for people with MS Deductions, exclusions and credits that may apply to YOU Taxes pay for many things we all need. But that doesn’t mean any of us should pay a penny more than the law requires. IRS Publication 907, Tax Highlights for Persons with Disabilities has important details for you or your tax preparer. It’s downloadable at www.irs.gov or you can call 1-800-829-3676. ∫ Gross Income: Supplemental Security

Income (SSI) and certain veterans (VA) disability benefits are excluded from your gross income. However, Social Security Administration payments may be taxed, and income from disability insurance that was paid for by your employer (or former employer) is taxable. See IRS publication 525.

∫ Impairment-Related Work Expenses: If

a physical or mental disability limits your ability to function as an employee, you may be able to deduct work expenses related to that impairment. Examples: wages for an on-the-job personal care attendant, or the cost of a text-to-speech computer program. See IRS publication 907 for details.

∫ Medical Deductibles: You may deduct

your medical and dental expenses for the year to the extent that they exceed 7.5% of your adjusted gross income, with a few exceptions. You may count the cost of home improvements or equipment to alleviate your physical or mental condition as medical expenses. Examples include

installation of ramps or air conditioning, the amounts paid to purchase, train and maintain a service animal, and more. See IRS publication 502. ∫ Dependent Care Credit: If you pay

someone to care for a dependent person so that you can work or look for work, you may claim a credit for those expenses. The dependent can be your spouse or another adult who lives with you, even if that person has some income, as long as he/ she is physically or mentally unable to be left alone. See IRS publication 503.

∫ The Earned Income Credit (EIC): You

may be due a cash payment if you worked in 2008 for a low annual wage — up to $12,590 for a single person with no dependents and up to $39,783 for a married couple, filing jointly, who have more than one dependent child. To get the credit, you have to apply. See Publication 596.

∫ Credit for the Elderly and Disabled: Low-

income individuals with taxable disability income may qualify for a tax credit. See Publication 524.

Start planning now. Get free help from the IRS at 1-800-829-1040. Call early, not on April 14th! TOLL FREE NUMBER 1 800 344 4867 15

MS CONNECTION

A Letter From the President, Phyllis Robsham Move it! These two simple words were the theme of our recent MS Awareness Week. We have, over the past year, asked all of you to “Join The Movement” with us toward a world free of MS. Now, the next step is, indeed, for us to “Move It” and make it happen. We encourage you to find the way that you are most comfortable in moving with us. For those of you who joined us for our annual Night of 1,000 Stars, you experienced how those around us can move us into action. I will never forget how our Unsung Hero, Dale Pendleton, encouraged us all to figure out what we are going to do to “Join The Movement” to end MS. Hearing from someone who has experienced first hand how MS can affect a person, a family, and a community – I think we can all find strength and determination in Dale’s words to take the next step in our journey. Here are a few suggestions: • Advocate for yourself and others living with MS. This issue of the MS Connection contains many suggestions on how to do this. • Our Walk MS event season is right around the corner. There are ways to move all around at a Walk MS site – you can walk, you can form a team, you can volunteer. All moves take us a step closer to our goal. • You will see in the Happenings section that the options for moving at a program in your area are endless. Not sure what we offer in your area? Move on over to a Talk MS Open House, where you can find out about our Talk MS groups, as well as all the other programs and services that are available near you. • You don’t have to Move It alone. We have something for everyone at one of our many upcoming Family Evenings. I encourage all of you to Move It by attending one of our upcoming programs or events. Additionally, share your story and knowledge of multiple sclerosis with someone around you. You may be surprised how you can move someone else into action. Moving It Together, Phyllis Robsham

Color for this newsletter help made possible by Swift Print Communications.

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 Rebecca Carroll Joe Cavato Kathryn Green Janet Gillow Tasha Hudson Dr. Thy Huskey Martha King Denise Nowack Wendy Schlesinger Lisa Shea Dr. Barry Singer 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

Gateway Area Chapter

happenings

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National Multiple Sclerosis Society

making the most of life and the least of MS

AJ, diagnosed in 2000

In the Know

In this issue New Connections . . . . . . . . . . . . . . . . . 19 Family Evening Programs. . . . . . . . 20-22 Therapeutic Recreation. . . . . . . . . . 24-25 Upcoming Teleconferences. . . . . . . . . . 27 Talk MS Groups . . . . . . . . . . . . . . . . 29-31

Program Helps Get You Moving In Your New Life with MS

Life is great, the kids are off at college, you’re healthy, what more could you ask? One day you feel a little dizziness in your head, and then this strange little numbness in your mouth. Naturally you think it must just be a bug. But then your food starts tasting badly, so you go to the doctor - just in case. Several doctors and several tests later you’re eventually hit with a diagnosis of multiple sclerosis. “The diagnosis was a bit of a shocker,” Don Hansel recalls when he was told he had relapsing remitting MS just this past September. “I never anticipated getting any disease with such a big name on it. I

always thought I was healthy. It was very upsetting for my wife and I. Then we started to really dig into it.”

Part of his process of “digging into it” was to enroll in the National Multiple Sclerosis Society’s Knowledge is Power (KIP) educational series for people newly diagnosed with MS and their families. The series of articles covers a different topic each week starting with “Taking the First Steps: What is MS, Dealing with your Diagnosis, Disclosure”. The program is free and can be delivered either via e-mail or regular mail.

Your Source for Knowledge, Wellness, and Support

CONTINUED ON PAGE 18 Spring 2009

TOLL FREE NUMBER 1 800 344 4867 17

Gateway Area Chapter FROM PAGE 17

In The Know

“I didn’t feel the real symptoms of MS until I was out of relapse,” she said. “I knew the pain I was going through but I didn’t know the day-to-day symptoms.” Once she was out of relapse and had regular MS symptoms, she had many questions she would frequently call the nurse about but, as Lyons says “that gets old.” The KIP program answered all those questions and also addressed many issues she had yet to consider.

Other topics in the series include: Maximizing your Employment Options, Maintaining Healthy Relationships, Working with Your Doctor, and an Appendix: Glossary of MS Terms. In an age where there is an abundance of information on any given subject, the Knowledge is Power course can provide you with a great starting point down this unexpected journey. For people like Hansel and Lyons who want to learn as much they can about a subject – especially a subject where one of its greatest challenges is the unpredictability and uncertainty of what lies in the future - Knowledge truly is Power.

Both Lyons and Hansel found the program to be easy to read and understand and full of great, in-depth information. For Hansel, the article on finding the right doctor confirmed for him that he did indeed have a good doctor. Lyons found the information on disease-modifying drugs extremely helpful. She liked how the information on medications was laid out, comparing all the drugs, their purposes, and their side-effects, making the information very easy to manage. The article also addresses managing side-effects, the warnings and benefits and even provides information on how to pay for the medications. Treating Yourself Well, another week’s topic, was Lyons’ favorite, as it addresses a variety of symptoms from vision problems to memory loss. What was especially helpful for her was knowing that even if you are not currently suffering from those symptoms, you may in the future, and you can then refer back to the article for assistance. She keeps them in a binder for easy reference. 18

Tahirah, diagnosed in 2004

HAPPENINGS

For Andrea Lyons, the KIP program answered all the questions she didn’t even know she had. When she was diagnosed last June she was in the middle of a relapse suffering from numbness on her right side and extreme pain. So at the time she really didn’t know what questions to ask.

Knowledge is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or e-mail formats are available. To register call 1-800-344-4867, or visit nationalmssociety.org/knowlege.

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

Have a cup on us! The Chapter will provide the first round of drinks and delicious treats for everyone! Registration Deadline: March 23 O’Fallon, MO Thursday, June 11 Bristol’s Seafood Grill 2314 Technology Drive O’Fallon, MO 63368-7279 Time: 6-8 p.m.

Please mark which event you would like to attend:

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Arnold, MO Thursday, April 2 Time: 6-7 p.m. Common Grounds Coffee Shop 1701 Missouri State Rd. Arnold, MO 63010 Registration Deadline: March 30

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O’Fallon, MO Thursday, June 11 Bristol’s Seafood Grill 2314 Technology Drive O’Fallon, MO 63368-7279 Time: 6-8 p.m. Registration Deadline: May 29

HAPPENINGS

Arnold, MO Thursday, April 2 Common Grounds Coffee Shop (in Jefferson County Library) 1701 Missouri State Rd. Arnold, MO 63010 Time: 6-7 p.m.

New Connections Registration

Name_____________________________ Address____________________________

A three-course dinner will also be included with this free program. Space is limited so make your reservation today!

Home phone_________________________ Work phone_ ________________________

Registration Deadline: May 29

Date of Diagnosis______________________

This program is sponsored by Bayer Healthcare.

Help the MS Society G

City/State/Zip________________________

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 chapter at gogreen@gatewaymssociety.org, and your name will be added to our cyber list. Thanks for helping us save printing, postage, and trees

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

Family Evening Programs – Something for Everyone

HAPPENINGS

Do face painting, magic shows, raffle prizes and good old-fashioned barbecue, along with the great outdoors sound like fun? What about a ride on the Grant’s Farm tram and a tour of Deer Park? Or does a night at the ballpark and a chance to throw out the first pitch sound more up your alley? No matter what your fancy, the Chapter’s family programs are the perfect way for you to spend a great evening with your friends and family and get the chance to meet other people living with MS. Gail Cameron, a participant and volunteer at last year’s Family Evening in Columbia at Twin Lakes, shares her experience and what it means for her to be able to attend.

“Going to these events is a great way to meet other people,” she said. “It’s good to hear how other people handle certain situations that you go through as a person living with MS. I think a lot of people get depressed because they can only imagine the worst case scenarios of being diagnosed with the disease. These events are a motivator for me because there are people there who are doing just fine with MS.” Although last year’s Family Evening in Columbia, had a brawl with Mother Nature and her decision for rain showers that day, Gail is looking forward to this year’s event at the new indoor location at Riechmann Pavilion, with easy access to Columbia’s beautiful Stephens Lake Park.

Michelle Dedert (center) attended last year’s Family Evening at Grant’s Farm with more than 40 family members and friends.

lot of fun things for the kids to do; like pictures with a Clydesdale, crafts, face painting, animals to visit, and dancing,” Michelle said. Michelle and several members of her family are already planning on attending this year’s Family Evening at Grant’s Farm scheduled for Saturday, May 16. “It’s important for me to go to these events to show that even though we have MS, we can still have fun and enjoy ourselves,” Michelle said. Even if animals and the great outdoors may not be your cup of tea, who can turn down enjoying the national pastime on a nice summer night?

“It will be really nice,” Gail said. “It’s fairly close to the lake if people want to fish, but then we also have the nearby indoor pavilion with air conditioning to protect us from any rain.”

Stacy Wright even had the opportunity to tap into her unknown talent of pitching when she had the chance to throw out the first pitch at the Gateway Grizzlies game in 2006.

Michelle Dedert enjoys having her picture taken with the Clydesdales at the aesthetically pleasing Grant’s Farm and isn’t the only one. Last year, Michelle along with more than 40 members of her friends and family, decided to attend last year’s Family Evening at Grant’s Farm.

“I was extremely excited when I got the phone call and told everyone I knew that I was going to throw out the first pitch,” Stacy said “My absolute fondest memory of our first Gateway Grizzlies game was that I was chosen to throw out the first pitch and my daughter was able to come on the field with me. I will never forget that as long as I live. My daughter was 5 at the time and she still talks about that day!”

“We love to go to this event because there is always a 20

1.800.344.4867

happenings Family Evening at Grant’s Farm

Activities include: g Meeting others living with MS g Photo with Clydesdales g Accessible tram tour of Deer Park-home to exotic animals from around the world! g Arts and Crafts area g Live music g Food buffet and beverages Early registration fee: $10 adult $5 child (Register before May 4) Regular fee: $20 adult $10 child Fee waivers available for program and transportation. Registration deadline: May 11

Family Evening at Columbia, MO Saturday, June 13, 2009 Time: 3-7 p.m. Stephens Lake Park, Riechmann Pavilion 2300 E. Walnut, Columbia, MO Family Evening in Columbia, MO is a great way to meet other people living with MS. Join us for an evening of fun, food, family and friends. This year, the program will take place at an air-conditioned indoor pavilion located with easy access to Stephens Lake. Activities include: g Face Painting g Arts and crafts area g Raffle prizes g Barbeque g Dessert potluck g Games and outdoor activities g Magic show and balloon animals Cost: FREE PROGRAM Registration deadline: June 8

Please mark which event you would like to attend:

[ ]

Grant’s Farm, St. Louis, MO Saturday, May 16, 2009

[ ]

Stephens Lake Park, Columbia, MO Saturday, June 13, 2009

Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-mail_____________________________ Do you use a mobility device?_______________ Do you prefer a vegetarian meal?_ ___________ Please list guest’s names and ages:_ __________ ________________________________ Payment Information (Grant’s Farm only) ( ) 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. These programs are sponsored by Boeing ECF, Shelter Insurance Fund, Swift Print Communications and United Access.

www.gatewaymssociety.org

HAPPENINGS

Saturday, May 16, 2009 Time: 6:30-10 p.m. 10501 Gravois Rd., St. Louis, MO 63123 Time to enjoy an evening with your friends and family and Grant’s Farm! The program begins with a ride on a Grant’s Farm tram and a tour of Deer Park. Your next stop is at The Bauernhof, home world-renowned stables, and location of the evening’s festivities.

Family Evening Registration

HAPPENINGS

Gateway Area Chapter

Take Me Out To the Ballgame

Night at the Ballpark Registration

Batter Up! Nothing says summertime like a trip to the ballpark. Grab your family and friends and cheer on the Gateway Grizzlies, River City Rascals, or Southern Illinois Miners. During the Gateway Grizzlies or River City Rascals game, you can also enjoy a buffet of all your favorite ballpark foods.

Please mark which event you would like to attend:

Register now to reserve your seats, as these events are sure to fill up quickly! Sunday, June 14 Time: 4:30 to 9 p.m. Southern Illinois Miners vs. Windy City Thunderbolts Game time: 5:05 p.m. Rent One Park, 1000 Miners Dr., Marion, IL 62959 Cost: $7.00 per person (no meal option)

Saturday, June 20 Time: 5:30-9 p.m. Gateway Grizzlies vs. Rockford RiverHawks Game time: 7:05 p.m. Gateway Grizzlies Stadium 2301 Grizzlies Bear Blvd., Sauget, IL 62206 Cost: $15 per person (includes dinner)

Saturday, June 27 Time: 5:30-9 p.m. River City Rascals vs. Evansville Otters Game Time: 7:05 p.m. River City Rascals Blvd., 900 T.R. Hughes Blvd. O’Fallon, MO 63366 Cost: $7.50 per person (does not include dinner) $21.50 per person (includes dinner) Registration deadline: June 9

[ ] [ ] [ ]

Southern Illinois Miners Sunday, June 14 Gateway Grizzlies Saturday, June 20 River City Rascals Saturday, June 27 [ ] meal [ ] no meal

Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-mail_____________________________ Do you use a mobility device?_______________ Do you prefer a vegetarian meal?_ ___________ (Grizzlies and Rascals only) Please list guests’ names and ages:_ __________ ________________________________ 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. These programs are sponsored by Boeing ECF.

1.800.344.4867

happenings Research MS

Research MS Registration

Please mark which event you would like to attend:

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 medication for MS SPEAKERS & LOCATIONS April 25, 2009 Noon to 2 p.m. Best Western, Carlinville/Litchfield, IL 19067 W. Frontage Rd., Raymond, IL 62560 Dr. Robert Naismith John L. Trotter MS Center, St. Louis MO Registration deadline: April 21, 2009 June 6, 2009 Noon to 2 p.m. Cape Career and Technology Center 1080 South Silver Springs Rd., Cape Girardeau, MO 63703 Dr. Amy Rauchway Saint Louis University MS Center Registration deadline: June 2, 2009

April 25, 2009 Carlinville/Litchfield Area, IL with Dr. Robert Naismith

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June 6, 2009 Cape Girardeau, MO with Dr. Amy Rauchway

HAPPENINGS

MS research 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. Learn how far we’ve come, where we’re going and what the NMSS and others are doing to move toward a world free of MS.

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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 Inc. 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: Georgia/Chris (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

Yoga St. Louis Iyengar Yoga Class 3305 Jamieson Ave. St. Louis MO 63139 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 May 5 - June 23 July 7 - Sept. 1, 5:30 – 6:30 p.m. (Beginner Class) 7 – 8 p.m. (Gentle Yoga Class) Thursdays May 7 - June 25 July 9 - Sept. 3 9:30 a.m. (Beginner Class) Saturdays May 9 - June 27 9:00 a.m. (Intermediate Class) No second session – class will resume in the fall

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 Contact: Linda (573) 441-8566 or lindalutz@mac.com

SOUTHERN 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. Instructor: Mindy Matthews Yoga at the Firm 1610 Freedom Dr. West Plains, MO 65775 Instructor: Vicki Hogan Contact: Vicki (417) 293-1184 or The Firm at (417) 257-7800 Cost: $40 for an 8-week session.

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 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

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 help 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

Antioxidants—The Colors of the Season One of the wonderful pleasures of spring is the beautiful produce that arrives in our markets—the sweet yellow corn, the tasty red tomatoes, the delicious cherries and purple plums, the variety of fresh berries. But with these and other vegetables and fruits, beauty may be more than skin deep. Fighting Power of Antioxidants Color may be your best clue to spotting foods that are rich in antioxidants—a substance that may protect the cells in our body from the damage caused by free radicals. Free radicals, or oxidants, are volatile and reactive compounds that can whirl about our body like a tornado leaving a path of destruction to cells along the way. The damage caused by free radicals may contribute to a host of health issues like aging, cancer, heart disease and perhaps even MS. Antioxidants are the great neutralizers, interacting

Antioxidants and MS Preliminary evidence suggests that the damage caused by free radicals may be involved in the disease process in MS. A few studies using an animal model of MS suggest that antioxidants may even be therapeutic. But the value of these animal studies is limited. There are no well-documented published studies of people with MS that show a clinical benefit related to antioxidant supplements. The safety of taking antioxidants for people with MS has not been established either. There is an important theoretical risk to consider. Antioxidant vitamins stimulate the immune system in laboratory experiments and in some groups of people. In MS, where an overactive immune system appears to be part of the disease process, stimulation may be dangerous.

with free radicals to minimize the damage they may otherwise cause. The antioxidant powers of vitamin C and E and betacarotene have been most studied, but new research is uncovering many other compounds found in foods that may provide these same benefits. Look for the Colors of the Rainbow Antioxidants are abundant in fruits and vegetables, and if you’re looking for the best place to find them, let color be your guide—particularly red, orange, yellow and blue. ANTIOXIDANT Vitamin C

Carotenoids With over 500 carotenoids found in nature the benefits of beta-carotene, lutein & lycopene are best understood.

WHERE IT’S FOUND Vitamin C is found in many fruits and vegetables including citrus, tomato products, papaya, guava, strawberries, red bell peppers, broccoli and potatoes. When it comes to beta-carotene look for yellow-orange or green fruits and vegetables like carrots, sweet potatoes, apricots, peaches, spinach & kale. Lutein is in corn and green vegetables including broccoli, brussel sprouts, spinach, kiwi & honeydew melon. Tomato products are rich in lycopene—in fact processed tomatoes contain more lycopene than fresh.

Vitamin E

Important sources of vitamin E include nuts, nut butters (like peanut butter) seeds, & vegetable oils.

When it comes to antioxidants, food sources appear to be preferred to supplements. An added benefit is that food sources are packed with other complementary nutrients that help you absorb them in the right form and right amount. Fill your plate with the colors of the rainbow and include 4-6 servings of brightly colored fruits and vegetables in your diet each day.

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 calls. April through July’s topics are as follows:

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

Stress and MS April 13, 2009, 7-8 p.m.

Speaker: David C. Mohr, Ph.D., Northwestern University Date: April 13, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of stress management, specifically stress related to MS.

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Diet & MS – The Nutrition Connection May 11, 2009, 7-8 p.m.

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Fitting Fitness In - Exercise and MS June 8, 2009, 7-8 p.m.

Diet & MS – The Nutrition Connection

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African Americans and MS July 13, 2009, 7-8 p.m.

Stress and MS

Speaker: Denise Nowack, RD Executive Vice President of Chapter Programs for the Southern California Chapter of the NMSS Date: May 11, 2009 Time: 7-8 p.m. Objectives: Learn how diet can play an important role in living well with MS, learn easy strategies to integrate into everyday eating and learn about energy conservation, meal preparation and making healthy choices.

Fitting Fitness In

Speaker: Rob Motl, Ph.D. University of Illinois Urbana – Champaign Date: June 8, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of exercise activities adapted to people with MS.

Africans Americans and MS

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.

Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-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 sponsored by Bayer Healthcare, Biogen Idec, EMD Serono Inc., Pfizer Inc., Teva Neuroscience. and Wachovia Securities.

www.gatewaymssociety.org

HAPPENINGS

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Gateway Area Chapter

Chapter Calendar March

MAY

2 Walk MS River Bend, IL 2 Walk MS Troy, MO 2-3 Spring Rendezvous at Pere Marquette, Grafton, IL 11 Diet & MS – The Nutrition Connection Teleconference 12 Talk MS Open House, Granite City, IL 14 New Connections Social Gathering, Jefferson City, MO 16 Family Evening at Grant’s Farm, St. Louis, MO 29-31 Challenge Walk MS, St. Louis, MO

HAPPENINGS

14 28

Tools of the Trade – Staying Healthy on the Job and Devices to Keep Your Moving MS Fitness Club Day St. Louis, MO MS Fitness Club Day Columbia, MO

APRIL 2 4 9 13 18 18 19 19 19 19 23 23 25 25 25

New Connections Social Gathering Arnold, MO Walk MS Carbondale, IL Talk MS Group Open House Mt. Vernon, IL Stress and MS Teleconference Walk MS Arnold, MO Walk MS Eureka, MO Walk MS Cape Girardeau, MO Walk MS Clayton, MO Walk MS Edwardsville, IL Walk MS St. Peters, MO Steppin’ Out for MS Night Walk, St. Louis, MO Women On the Move Luncheon, St. Louis, MO Walk MS Columbia, MO Walk MS Millstadt, IL Research MS Carlinville, IL

JUNE 6 8 8

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

11 13 14

20 27

Market Place Ad Permobile Electric Wheel Chair

Fully equipped 2007 electric wheelchair. In good condition, needs new battery. Asking $3,000. Call Elsa in Brentwood, MO at (314)-918-8960. 28

Pride Electric Scooter with Charger Scooter with a navy blue seat and a charger. In great condition. Asking $200. Call Anne in Clayton, MO at (314) 863-8107. 1.800.344.4867

Get Motivated. Get Moving. Join an MS Fitness Club 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, 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. 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 (314) 781-9020.

Fitness Club Leaders

St. Louis, MO Heidi Sherman 314-835-0203 (daytime activities leader) Heidi.Sherman@charter.net Sabrina Happel 636-233-7854 (nighttime activities leader) Subrinu2007@hotmail.com Columbia MO Gail Cameron 573-999-0471 cameron1298@yahoo.com

happenings Talk MS Group Open House Talk MS Group Open House Registration 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 Groups are moving forward.

Mt. Vernon, IL Thursday, April 9, 2009 at 6 p.m. Faith Lutheran Church 1104 N. 42nd St. Mt. Vernon, IL 62864 Granite City, IL Tuesday, May 12, 2009 at 7 p.m. Gateway Regional Medical Center-Pascal Hall 2100 Madison Ave. Granite City, IL 62040 New London, MO Monday, June 8 at 7 p.m. Ralls County Health Department 405 West New London, MO 63459 The Gateway Area Chapter currently has Talk MS groups that meet in Central Missouri, Metro St. Louis, Southeast Missouri, Metro Illinois, and Southern Illinois. Talk MS groups bring together people who share a common life experience for support, education, and mutual aid. Talk MS groups can help their members feel more empowered and self-confident, learn new strategies for confronting problems, and provide an opportunity to be helpful to others. See complete Talk MS Group listings on pages 30 and 31.

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Mt. Vernon, IL Thursday, April 9, 2009 Time: 6 p.m. Faith Lutheran Church

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Granite City, IL Tuesday, May 12, 2009 Time: 7 p.m. Gateway Regional Medical Center-Pascal Hall

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New London, MO Monday, June 8, 2009 Time: 7 p.m. Ralls County Health Department

www.gatewaymssociety.org

HAPPENINGS

Chapter staff members will be attending to let you know about the programs and services offered in your area.

Please mark which event you would like to attend:

Gateway Area Chapter

TALK MS GROUPS

Programs in a Box

You may have noticed that things are sounding a little different with our peer support programs. Talk MS is the new name that will be used when referring to our Talk MS Groups (formerly Self-Help Groups), Telefriends, and Beginning Conversation programs. This name change will help our peer support programs stay consistent with other Gateway Area Chapter branding, such as Bike MS and Research MS.

Ask your Talk MS Group leader about the new ‘programs in a box.’ Each month groups will receive a ‘program in a box’ which will cover different topics important to people living with MS. Each ‘program in a box’ will include leader and resource guides, guest speaker suggestions, discussion ideas, instruction for on-line courses, DVDs and other tools. The goal is to .provide each Talk MS leader everything they need to lead a meeting as well as providing materials for members to take home.

HAPPENINGS

New Lingo - Same Great Programs

MISSOURI Cape Girardeau

3rd Saturday, 10 am

Columbia

Call for Dates

Crystal City/Festus Fulton Jefferson City Moberly New London Poplar Bluff St. Charles

2nd Tuesday, 1 pm 1st Sunday, 2:30 pm 3rd Monday, 6 pm 2nd Tuesday, 6pm 2nd Monday, 7 pm 2nd Sunday, 2 pm 3rd Sunday, 3pm

St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 University of Missouri-Columbia Quarterdeck Bldg., Rm. 118 2401 Lemone Ind. Dr., Columbia, MO 65201 Disability Resource Assn. 420B S. Truman Bl., Crystal City, MO 63019 Callaway Community Hospital 10 South Hospital Drive, Fulton, MO 65251 St. Mary’s Health Center, Assembly Room 100 St. Mary’s Medical Plaza, off of West Dunklin Jefferson City, MO 65101 Randolph Area YMCA 1000 Kwix Rd., Moberly, MO 65270 Call for Location

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 Lynne (660) 263-1868 Debby (573) 267-3365 mlrdsr@rallstech.com Tamra (573) 568-3912 cawalker@sbcglobal.net

First Christian Church 1601 North Main, Poplar Bluff, MO 63091 Hardees Restaurant at Mid Rivers Mall Dr. and Jim (636) 940-1521 Mexico Rd.

West Plains

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

Rolla

TBA

Please check gatewaymssociety.org for updates.

1.800.344.4867

Allison (800) 344-4867 allisonharper@gatewaymssociety.org

happenings ILLINOIS Belleville/ O’Fallon Granite City

Metro East Mt. Vernon Southern Illinois

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

Apr. 22, 7 pm June 24, 7 pm 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

Amy (618) 235-4226 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

HAPPENINGS

Litchfield

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

Terri (618) 242-8448 Robert (618) 983-0321 Lisa (618) 983-0443

ST. LOUIS METRO Affton

1st Thursday, 7pm

Maryland Heights

Call for Dates

West County

2nd Tuesday, 7 pm

Perspectives on MS Networking Group (mid-30’s & under) SPECIALIZED GROUPS Men’s Chat MS Fun, Friends & Food Veterans with MS CarePartner and Family Group

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

Last Tuesday of the Telephone group month, 7 pm David C. Pratt Cancer Center May 6, 6pm St. John’s Mercy Medical Center Aug. 4, 6 pm 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

www.gatewaymssociety.org

Little Program Delivers Big Smiles The smallest gesture can mean the world to someone. A personal visit or a gift with a special meaning can make a person’s day. That’s the idea behind the Chapter’s ‘Deliver A Smile’ program. Rosemary Levitt, 79, of Olivette, MO was diagnosed with MS 13 years ago. She lives by herself and leaves her home about once a month for groceries.

a handmade fleece blanket and full-sized toiletries to Levitt who was so grateful for her gifts. Levitt showed her appreciation by having ready freshly baked holiday cookies wrapped in handmade reindeer bags for Chapter staff.

The program used to be known as ‘Gift Baskets’ and individuals received a basket of goodies including samples of toiletries, notepads, picture frames, and other knickRosemary Levitt always knacks. looks forward to the

‘Deliver A Smile’ serves people living with MS who are home-bound or living in long-term care facilities. They are usually socially isolated and unable to go out without assistance. We need your help! The only way that programs like ‘Deliver A Smile’ are possible is through people like you. We are asking for monetary donations and/or gift cards to: Walmart, Kohls, Kmart, Target and Walgreens

Chapter’s ‘Deliver a ‘Deliver A Smile’ puts a fresh twist on the Smile’ program. program. Chapter staff and volunteers visit people with MS and bring a “little something.” In December and July, items that are For more information please visit our website, or requested by the recipients are personally delivered. contact Kimberly Wilcox at (314) 781-9020 (option 2) or This year, participants were asked what they could use kimberly.wilcox@gatewaymssociety.org. that would make them smile. Chapter staff delivered

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO

Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146

Mailing Label Changes

Please check the appropriate box below, correct the label and then return to National MS Society, Gateway Area Chapter

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: _____________________________