2012 Gateway Area Chapter Calendar
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THE WALK WILL CHALLENGE YOU. THE EXPERIENCE WILL CHANGE YOU. 3 DAYS. 50 MILES. COUNTLESS MEMORIES. YOU CAN BE A PART OF CHALLENGE WALK MS. “It was incredible. The fact that I have MS and I was going to do this walk was amazing. The biggest thing is you get a real sense of community.” - Susan, diagnosed in 2010
“I’ve met some wonderful and inspiring people over the years at Challenge Walk MS. I never thought that walking 50 miles would be fun, year after year, but it truly is.” - Randy, walking for his dad “Other than my family, I’ve never been as passionate about anything in my life as I am about Challenge Walk.The people who do the walk are the most amazing people I’ve come across in my life.” - Rick, diagnosed in 1997
“We fell in love with Challenge Walk MS. It’s great because it is so intimate. It’s like a retreat. ” - Heather, diagnosed in 2009
DEAN TEAM AUTOMOTIVE CHALLENGE WALK MS | JUNE 1-3 | ST. LOUIS, MO | GATEWAYMSCHALLENGE.ORG | 800 344 4867
DO SOMETHING ABOUT MS NOW 2012 FUNDRAISING EVENTS APRIL 21 Arnold, MO Carbondale, IL Clayton, MO Edwardsville, IL Eureka, MO St. Peters, MO Troy, MO APRIL 22 Gateway Area Millstadt, IL Walk 2012 APRIL 22 Cape Girardeau, MO Godfrey, IL Moberly, MO APRIL 26 gatewayMSwalk.org Steppin’ Out for MS Night Walk St. Louis, MO APRIL 28 Columbia, MO MAY 12 Jefferson City, MO
Walk 2012 JUNE 1-3 St. Louis, MO
MuckRuckus MS St. Louis, MO - MAY 19 Columbia, MO - TBD
2012 SEPTEMBER 8-9 Columbia, MO
www.gatewayMSsociety.org 800-344-4867
Back in the Saddle Valarie Brunjes, who has lived with MS since 2003, had been to Family Weekend at Touch of Nature before, but had never been on a horse before last fall. “I was terrified at first and really dubious of how these people were going to put me on a horse,” Valarie said. Not only did Valarie get to experience the hourlong trail ride with her 8-year-old daughter Maya, she also felt more connected to her body. “Because I sit in this wheelchair all the time I don’t get a lot of opportunities to move my hips anymore,” Valarie said. “To have them move and to reconnect them to my brain was a pretty neat experience. I felt really unstable about 15 minutes into it until my hips kind of loosened
up and I felt like I was walking. It was pretty incredible.” The benefit of the therapeutic horsemanship experience didn’t end when Valarie left Touch of Nature. “It gave me a completely different understanding about what my hips are doing,” Valarie said. “To actually move with that rhythm and the gait of a horse has changed the way I feel when I stand up. It’s given me an increased sense of security in daily tasks. I’ve got a different understanding of my body because of it.” The Chapter offers financial assistance to qualified candidates for therapeutic horsemanship. Go to gatewaymssociety.org g Staying Healthy With MS g Therapeutic Horsemanship.
www.gatewayMSsociety.org | 800-344-4867
Valarie Brunjes and daughter Maya enjoyed horseback riding together at Family Weekend at Touch of Nature in Carbondale.
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10 Kickoff Rally O’Fallon, MO O’Fallon, IL Cape Girardeau, MO Columbia, MO
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Kickoff Rally Edwardsville, IL Fenton, MO Chesterfield, MO
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College Scholarship Application Deadline
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Do you want to learn more about the Chapter or want to get more involved? Join us for a one hour open house, see how the Chapter is helping people move forward and learn how you can join the movement! Open houses are the first Thursday of every month at noon or 6 p.m. at our St. Louis office at 1867 Lackland Hill Parkway, 63146. Please RSVP through our website at gatewaymssociety.org g Chapter Calendar, or call 800-344-4867.
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Persistence, Patience Pay off for Self-Advocate
Persistence paid off for Robert Williams. Robert, After about a year and jumping through all sorts who has MS, lives with his wife in a low-income of hoops including numerous requests to the Williamson County Housing Authority apartment Williamson County Housing Authority, contacting in Johnston City, IL. Both he and his wife are the Southern Illinois Center for Independent Living disabled, yet his requests for a handicapped and finally filing a complaint through the U.S. parking space to be installed at his complex were Department of Human Rights, the Williamson denied. After some County Housing research, Robert learned “(Getting the accessible parking spot Authority finally agreed that not only was he install a handicapped installed) takes a long time, but if you to eligible for a space, but parking space reserved it was illegal to not have feel like your rights are being violated, for him. one. than stick with it and do whatever it “I was surprised, happy takes. It didn’t cost a dime.” “At the time I was and elated because it thinking they need a took almost an entire — Robert Williams year,” Robert said. spot not just for me but for others,” Robert said. “I decided to start pushing for it and I took it as far The new spot means that Robert and his wife will and as high as I could. I kept with it because I knew have a safe spot to get in and out of their vehicle what they were doing and saying was illegal.” and won’t have to park along a ditch near the parking lot.
Robert Williams and wife Diane finally got an accessible parking spot in their apartment complex, after some persistence. Robert advocated for himself and it took a little research and a lot of time and patience, but it’s worth it. “It takes a long time, but if you feel like your rights are being violated then stick with it and do whatever it takes,” Robert said. “It didn’t cost a dime.”
www.gatewayMSsociety.org | 800-344-4867
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Interested in special MS licence plates AND helping the Gateway Area Chapter? Contact the Chapter at 314.781.9020. Sign up at www.nationalMSsociety.org/MSactivist to receive Action Alerts from the National MS Society.
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MS Action Day Jefferson City, MO Town Hall Meeting Columbia, MO Carepartner & Family Young Professionals Group Meet & Greet
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Town Hall Meeting Mt. Vernon, IL Lincoln’s Birthday
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New Connections Cape Girardeau, MO
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Mountain Climber/Adventurer with MS to Kick-Off Awareness Week March 11
On April 23, 2011, Wendy Booker became the first person with MS to stand at the North Pole. And that was just the beginning.
Wendy Booker, who has lived with MS since 1998, has stood on top of six of the world’s Seven Summits, as well as the North Pole. She will help us kick off MS Awareness week at a special thank you rally on Sunday, March 11.
After her diagnosis with MS in 1998, Booker had made it her quest to climb the world’s Seven Summits. She succeeded at six: Mt. McKinley, Mt. Kilimanjaro, Mt. Elbrus, Mt. Aconcagua, Mt. Vinson Massif and Mt. Kosciuszko. But after two attempts in 2009 and 2010, she realized that summiting Mt. Everest was simply beyond her reach. If she couldn’t reach the highest peak on earth, she decided she would reach the geographical “top of the world” instead.
Wendy, diagnosed in 1998 On top of Mt. McKinley in Denali
“Taking on a physical challenge or goal is always a great way to engage your brain and move forward, but a challenge doesn’t always have to be physical,” the 57-year-old mother of three said. “Perhaps it is learning to paint, or a foreign language, or music. It doesn’t matter what it is. But during the time your mind is engaged you get back a piece of what you were before you had MS, and that is where empowerment will come from.” Booker has said from the start of her Seven Summits journey that the physical peaks she climbs are metaphors for the ups and downs
we all face in life — especially if life includes an unpredictable illness. “We often have to try a little harder and take a little longer,” she said. “I challenge those with MS to go out and find that special thing, that activity, that passion that will take them away from their MS, if only for awhile, and from that they will see that anything is possible.” Get the latest news on Booker’s adventures at www.wendybooker.net.
www.gatewayMSsociety.org | 800-344-4867
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MARCH 11-17 IS MS AWARENESS WEEK.
• Start a Walk MS team, or ask someone to start a team in your honor. • Mention MS Awareness Week on Facebook. • Mention the MS Society in your email signature. • Sign up to volunteer for a Chapter event. • Wear orange during MS Awareness Week
Carepartner & Family Group
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Myelin Hunter Makes Big Impact in First Walk MS In Tim Sauer’s first Walk MS fundraising campaign, he had an interesting concept. “I never once asked for a donation,” Tim said. “I told my story and pointed them to where they could go to donate.”
Tim, who was diagnosed in September of 2010, used his Walk MS campaign as an opportunity to tell people he had MS. Tim sent out a series of emails describing living with MS and how it not only affects him, but his wife and two sons. “Sending those emails was something I would not typically do,” Tim said. “I’m usually more private; my feelings are my feelings. From that standpoint this was a big thing.”
Tim Sauer, who says he never does anything “People were starting to not see me but something ‘small’, raised different,” Tim said. “It was because I wasn’t sharing with them what was going on. Keeping it about $13,000 in his first year quiet generated more questions.” at Walk MS. Tim decided to tell people he had MS on his 40th birthday in February.
While Tim initially hesitated in telling people he had MS, once he decided to disclose it and once he decided to raise money for Walk MS – it was out there. “I don’t do much small,” Tim said. “So I figured if I’ve got MS, I’m going to deal with it. I started going through all of my contacts and started putting out the emails and it progressed from there and before I knew it, my email distribution was up above 500-600 people. I had people from multiple states making donations online.”
Tim’s team the Mylein Hunters grew to about 30 people and raised about $13,000. While Tim’s messages inspired people to donate, their donations in turn inspired Tim. “The fact that they were willing to donate on my behalf really motivated me to do more and to be more active,” Tim said.
www.gatewayMSsociety.org | 800-344-4867
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Carepartner & Family Group Palm Sunday April Fool’s Day
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Free From Falls St. Louis, MO
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Arnold, MO Eureka, MO Carbondale, IL Millstadt, IL Clayton, MO Columbia, MO St. Peters, MO Edwardsville, IL Troy, MO
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Wellness Network Steppin’ Out for MS Night Walk Downtown, St. Louis, MO
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MARCH 2012
Connect with others living with MS. Visit gatewaymssociety.org g “Meet Others with MS” to learn about social programs and events like Family Evening and Weekend, carepartner resources and Talk MS programs.
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Getting Down and Dirty for Keri When someone living with MS tells their friends about their diagnosis, friends wonder and ask ‘what can I do?’ Keri Pruneau, who was diagnosed a couple of years ago, found an answer for her friends – ‘get dirty with me at this fundraiser for the National MS Society.’ Keri’s team, the Mudflaps, were 11 strong last year and raised nearly $4,000. “This is good for my girlfriends to really show their support,” Keri said. When Keri, who enjoys physical challenges,
heard about the obstacle course (now known as MuckRuckus MS) and it definitely interested her. “It seems like something I would want to check off my bucket list,” Keri said. The fact that money raised through the event benefits the 6,800 people in our area like Keri who live with MS was just the icing on the cake. “Every person on my team tried to fundraise really hard,” Keri said. “Me having MS really gave them a reason to get involved and it opened our eyes to what charity events are all about. It’s truly
meaningful to people. It makes you want to be a better citizen and to be empathetic towards people.” Keri will also definitely be back in 2012 for MuckRuckus MS. “It was a really good experience and I’m glad I did it and will definitely tell others about it,” Keri said. “I do it because I can. I want to move while I can. Because my leg gives me so many issues, I fear that I’m going to have mobility issues and it scares me. So I want to do the best I can and move as much as I can and fundraise as much as I can.”
Keri Pruneau, her husband and a group of friends known as the Mudflaps raised nearly $4,000 last year.
www.gatewayMSsociety.org | 800-344-4867
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Aren’t sure what to give mom or dad for Mother’s Day or Father’s Day? A donation to the National MS Society in Carepartner & Family Group their honor is sure to fit. Free From Falls Go to gatewaymssociety.org g “Donate.” St. Louis, MO
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Jefferson City, Kickoff Ride Columbia, MO MO 2012
Talk MS Meet & Greet St. Charles, MO
New Connections Mt. Vernon, IL
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World MS Day APRIL 2012
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Up for the Challenge - In for the Experience When Susan Billiot first heard that she may have MS, she didn’t believe it. “I wasn’t having any problems,” Susan said. “I didn’t feel bad so I thought nothing was wrong.”
Susan accepted the challenge and joined the MS Ramblers team . She used Challenge Walk MS as a way to tell people that she had MS, and to raise more than $5,000. “I just thought I’d send out a link to my fundraising site on my facebook page,” Susan said. “I couldn’t believe it. I got such an overwhelming response from people – people I hadn’t seen since high school.”
A couple months later, when Susan was out on her daily walk with her husband, her leg felt stiff and was dragging. That’s when it hit that she may actually have MS. Then some friends who also live with MS told Susan about the Dean Team Automotive Challenge Walk MS and walking 50 miles in three days. “I didn’t think it was physically possible to walk 50 miles in three days,” Susan said. “My husband said yeah that’s crazy, you can’t walk 50 miles, you’ll be stumbling all over the place. But then I thought why not? I didn’t know what the course of MS was going to take and this would be my best shot at doing Challenge Walk MS.”
Those three days in June were also overwhelming to Susan. “It was incredible. I didn’t think I’d be able to do it,” Susan said. “The fact that I have MS and I was going to do this walk was amazing. When you’re diagnosed with MS you come up with a list of things that you may not be able to do anymore, like walking. This gave me the opportunity to do something that I had never done before. I feel like I’m in better shape and I work harder because there is nothing to motivate you more to walk than to think you may not be able to.”
www.gatewayMSsociety.org | 800-344-4867
Susan Billiot had a memorable experience at her first Challenge Walk MS with the MS Ramblers.
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Don’t forget you can access Chapter programs like the monthly Midwest Teleconference series or the Wellness Network from your home phone and computer at gatewaymssociety.org. Walk 2012
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Research MS Carbondale, IL Father’s Day
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Kids Find Comfort Zone at Inaugural Camp Hope MS Wendy Schneider knew everything she needed to know about her daughter’s experience at Camp Hope MS when Wendy picked up 10-year-old Lelah from the camp in Makanda, Illinois. “The first thing she said to me was ‘I am so coming back next year,’” Wendy said. Wendy, who has been living with MS since 1996, thought that the five-day summer camp would be a great opportunity for Lelah to just get away and have some fun, as well as meet other children affected by MS. “I thought this would be very good because if I do have a major relapse, it would be good for her to build friends who understand what it’s like to have a parent with MS,” Wendy said. “The staff did a phenomenal job making her and all the kids
feel comfortable, more so than any other camp experience. The staff really shined bright.” In July, the Chapter held its inaugural Camp Hope MS at Touch of Nature, just outside of Carbondale, and included swimming, canoeing, pontoon boat rides, adventure hikes, fishing, campfires, hay rides, arts and crafts, horseback riding and MS education and sharing groups. Wendy said the staff and volunteers created a very comfortable environment for her daughter. “Lelah didn’t know anybody going to the camp but she seemed very comfortable with all the kids,” Wendy said. “I’m very glad she went. I don’t know what it was that the staff and volunteers did, but she just seemed to come more out of her shell and I want that for her. For her just to forget about serious stuff and be a kid was great.”
The inaugural Camp Hope MS was a tremendous success last July. Campers include (from left): MarLee Halfley, Lelah Schneider, Madeline Oxendine, and Carly Cottingham.
www.gatewayMSsociety.org | 800-344-4867
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JUNE 2012
Get inspired by the Tour de France and start your own Bike MS team! With 40, 75 and 100-mile route options each day, we’ve got a route for every cyclist. Go to gatewaymsbikeride.org.
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Funding The Future The road has never been easy for Rebecca Merlenbach, who won the National MS Society’s Presidential Scholar award in 2011. When Rebecca was diagnosed with MS as a teenager, her parents were unable to care for her and she was homeless. Due to financial hardships, her MS went untreated for a year causing her grades to suffer due to depression, migraines and blackouts. Through it all, Rebecca gained a new perspective on life. She considered MS the diamond in the rough that helped her become a more optimistic caring person with a drive to succeed. She is now studying public relations management and international business to learn how to run a nonprofit organization helping children in need.
“Before I was diagnosed with MS, I took life for granted. Now I try to stay healthy, listen to my body, and strive to succeed. Sometimes jewels are hidden in the rough. MS was the rough that helped to reveal a more optimistic, caring me.” — Rebecca Merlenbach Presidential Scholar Award Winner
www.gatewayMSsociety.org | 800-344-4867
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Tuesday In 2011, the Chapter awarded $40,000 to 21 new college students through it scholarship program.
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Bike MS a family affair for MHW Milers For the MHW Milers team, Bike MS is a family affair – in fact it’s more like an annual family reunion. It all started with Jack Turek and his brother riding for their cousin, Liz Mullen, who has MS. The next year another cousin and Jack’s son-inlaw joined. A couple of years later, the family members who came to Columbia to cheer on the riders decided to volunteer and now they sponsor a rest stop every year. The 20-25 person contingent that makes the trip to Columbia includes about 6-7 riders each year and enough volunteers to staff a rest stop. “We have a catered dinner and party on Friday and Saturday night and it has become a mini-family reunion
as well as riding for the cause,” Jack said. “We wanted to keep our team just family. It makes it what it is for us and it keeps us all involved. We’ve got all kinds of cousins who live across the country. We have had people come from San Francisco, New York, Kentucky, Connecticut, Colorado and Texas.” The team name, MHW Milers, is of course a family name – in fact it’s a three-family name. The team rides for five people who live with MS, one Mullen, three Haskells and one Williams. The families are actually connected through another family name, the Connells, the namesake of the rest stop Connells’ Crossing. Bike MS isn’t just about getting
The MHW Milers Bike team has raised more than $240,000 since 2004. together and sharing stories – it’s also about raising money, and lots of it. Since 2004, the team has raised more than $240,000 simply through personal solicitation. “We started out our first year and raised $4,500 and thought that was great,” Jack said. “With more people riding or volunteering we’ve expanded the network. Everybody
www.gatewayMSsociety.org | 800-344-4867
gets a tremendous amount of satisfaction that not only are we able to have fun, but we’re doing something really meaningful not only for our own relatives but for others living with MS. It’s a way to give back. Many of us are awfully fortunate, so for me it’s become my primary way of giving back.”
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Wellness Network
Do you know about the MS Ambassadors program? Become an MS Ambassadors and discuss MS with friends and family, tell your stories at MS Society events, speak to community groups, talk to your doctors and other health professionals, reach out through your church or synagogue, visit with sponsors, share information online and represent the MS Society through media outreach. If interested call 314-781-9020.
New MRI research could spell earlier diagnosis in MS One of the most difficult and frustrating things about multiple sclerosis is simply diagnosing it.
Dr. Tammie Bensinger and Dr. Soe Mar hope that their research in special MRI techniques will be a step forward. The research at Washington University is funded by the Gateway Area Chapter of the National MS Society. “Our hypothesis is that we can see the difference between myelin injury vs. nerve injury using a special type of MRI called diffusion tensor imaging,” said Dr. Bensinger, a neuroradiologist. The study actually looks at children and trying to differentiate pediatric MS from Acute Disseminated Encephalomyelitis (ADEM).
“Sometimes we have a problem differentiating children with ADEM and MS,” said Dr. Soe Mar, a pediatric neurologist at Children’s Hospital in St. Louis. “Usually it’s a clinical judgment to determine what it is. So we’re hoping directional diffusivity can potentially measure the axonal damage.”
Being able to diagnose children with MS has been particularly challenging, and delays or misdiagnosis could be potentially harmful to children. “Right now we don’t give immune therapies to children until we’re positive what they have is MS,” Bensinger said. “We’re worried that in kids we’re delaying treatment because we can’t tell the difference between the different diseases.”
Dr. Soe Mar and Dr. Tammie Bensinger are working on a special type of MRI technique that could benefit people living with MS. If the diffusion tensor imaging is effective then it could help with diagnosing MS and also determining how effective treatments for MS are.
www.gatewayMSsociety.org | 800-344-4867
“We are hoping in the long run that we can use the technique in people with MS to differentiate between the axonal damage and myelin damage and how damage correlates with disability,” Dr. Mar said.
October Sunday Sign up to get research updates at gatewaymssociety. org. g MS Research.
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Relationship Matters: Couples Living with MS When Dennis Murphy was diagnosed with MS in 2008, he looked for answers. “Education is everything,” Dennis said. “The more educated you can be the more proactive you can be and the more prepared you can be for whatever happens when it comes around the corner.” With that in mind Dennis and his wife Kathy attended the Chapter’s Relationship Matters program in Cape Girardeau designed for couples living with MS and carepartners. The Murphys learned they aren’t alone and they face issues other people face every day. “The weekend was nice because you hear other couple’s stories and things resonate with things that we are struggling with,” Kathy said. “It was very valuable talking to others about different stages of the disease and different resources. We didn’t know there were this many resources available!”
Dennis is used to going 110 miles an hour. He has worked multiple jobs, been a community coordinator, a church pastor as well as a father and grandfather. Kathy has to walk a fine line on when to help and when to let Dennis be independent. Learning strategies to walk that fine line was one of the reasons the Murphys attended Relationship Matters. “I try to be so independent and she is a natural caregiver, Dennis said. “I could see that it was creating some stress for her not being able to do things for me like she would like to. I thought the program would be a really good fit for us and for where we’re at in our relationship.” “My husband is my hero with MS because he never complains,” Kathy said. “The first time it really affected us is when we went to the zoo with the kids and he was really struggling and he just kept walking and never complained. That was very brave on his part and he tried to protect us from how he was feeling. As his wife it upsets me to
Kathy calls her husband Dennis, who was diagnosed in 2008, her hero for how he handles living with MS. see him struggling or know he’s in pain, but at the same time I really see how brave he is and he keeps on going. That’s why he’s my hero.”
www.gatewayMSsociety.org | 800-344-4867
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November is National Caregiver’s month. Check out resources at gatewaymssocity.org g “Learn about MS” g “For Caregivers.”
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Thank You Volunteers We couldn’t do it without you! KATE SMITH YOUNG PROFESSIONALS VOLUNTEER For me, volunteering is an opportunity to make a positive impact. At the same time, I get the benefit of meeting amazing people and learning team work and persistence, so it’s a win win! Getting the Young Professionals Group off the ground has had its ups and downs and sticking with it while the group grows has taught me invaluable lessons. I am constantly amazed by the number of people and programs working to cure this disease! I’ve also learned a lot about leadership, team work, networking, and community building. These are all invaluable skills and its pretty neat that I’ve been able to learn all of this while giving something back to my community.
KYLE ANDREWS DO IT YOURSELF VOLUNTEER I volunteer my time to organize Do-ItYourself events with 100% of proceeds benefiting the Gateway Area Chapter because my mom was diagnosed with MS when I was 3. The disease has always hit us literally close to home. It is my way of fighting back after watching my mom suffer all these years. I always dedicate these events to my mom. I’ve learned how many of your friends and family are willing to support you and your cause. People just seem to be happy when they are able to help out. It makes me feel good and adds smiles to other people’s faces, especially my mom’s.
www.gatewayMSsociety.org | 800-344-4867
JOYCE CLARK TELEFRIEND VOLUNTEER I have lived with MS for 40 years and have been a Telefriend Volunteer for more than 20. I enjoy hearing and talking to people with MS as they are trying to live a better life. Everybody needs a chance to be able to help themselves. The people I call inspire me and it is interesting to learn things from them that I can apply to my life. When I was diagnosed with MS, my children were small and I did everything anyone would have done with small children and it was tough at times, but I had to keep doing it. I hope in some small way, my volunteer calls help keep people moving.
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Wellness Network
Thank you for Joining the Movement with us. Remember we have something for everyone at the National MS Society. If you want to volunteer for a couple of hours, a day, or throughout the year, we have a fulfilling volunteer project for you. Go to gatewaymssociety.org g Volunteer for more.
FOLLOW US ONLINE! facebook.com/gatewaymssociety facebook.com/gatewaymsbikeride facebook.com/gatewaymschallenge facebook.com/gatewaymswalk facebook.com/gatewaymuckms
youtube.com/gatewaymssociety
twitter.com/gatewayms
We hope you enjoy the Gateway Area Chapter’s 2012 calendar. We hope you find it useful and will join us this year by trying a program you haven’t before or inspiring our event participants through the Champions program. For the most up-to-date information go to gatewaymssociety.org g Chapter Calendar or follow us online.
Have a very safe and Happy New Year!
Gateway Area Chapter | 1867 Lackland Hill Parkway | St. Louis, MO 63146 www.gatewayMSsociety.org | 800-344-4867