Access MDA Winter 2016
Your guide to the MDA community, from news briefs to inspiring profiles
Your guide to the MDA community, from news briefs to inspiring profiles
Access MDA is a collection of MDA news, inspiring profiles about individuals and families living unlimited every day, and much more.
Be an MDA Champion: Sign up to be an MDA volunteer today and make a difference for families where you live
Families are at the heart of all MDA is doing to deliver its lifesaving mission. Every day, MDA relies on the support of its dedicated volunteers all across the country who volunteer in local offices, who lend their time and talents to MDA special events like MDA Muscle Walk and MDA Galas, and who commit one week every summer to help kids experience life beyond limits at MDA Summer Camp.
Volunteering with MDA will enrich your life and inspire you in ways you never dreamed possible. It’s a great way to develop important leadership skills while simultaneously giving back to your community. And, studies show that people who volunteer are happier with their overall work-life balance. It’s a win-win for everyone!
Are you ready to lend your time and talents to support and empower kids and adults fighting muscular dystrophy, ALS and related muscle-debilitating diseases and the families who love them? Join the cause today.
A Hero’s Journey: A mom combines running and MDA fundraising to support her son
When Gloria Smith first heard from her family doctor that her son, Harry, now 3, had Emery-Dreifuss muscular dystrophy (EDMD), which is characterized by wasting and weakness of muscles in the shoulders, upper arms and calves, she struggled with how to cope with the news.
Looking for a way to channel her emotions, Smith “found a local gym and started kickboxing, just to get myself active,” she recalls. And with that, between doing everything she could to support her child in his journey, Smith says she started her own “fitness journey.”
Little did Smith know, her new stress-releasing hobby would soon turn into a charity called Harry’s Heroes that would raise more than $14,000 for MDA in 2015 through its MDA Team Momentum endurance running program.
“The first event was a small race with my sister where we made 10 cups that said something about being a hero for Harry,” she says. “After that, we thought maybe we could do another race and get more people involved, and the idea just snowballed from there.”
By March, Smith and Harry’s Heroes began to hit their fundraising stride for the Philadelphia Love Run Half Marathon. “It wasn’t an official MDA Team Momentum event, but we worked with Team Momentum to raise money through the endurance series,” Smith says. “We ended up with 13 people running for Team Momentum, but 30 people ended up running for Harry’s Heroes altogether. All these people I had never met before were running for Harry. I burst into tears when I hit the finish line. It was the first time we had everyone come together for the cause; it was overwhelming.”
Since then Smith says that Harry’s Heroes has been “exploding,” and they had their largest run yet at the Marine Corp Marathon in Fredericksburg, Va., in October. She credits social media, friends and family for the incredible success. And while Smith is blown away by the success, she also loves seeing how Harry’s Heroes has inspired others.
“My favorite moments are when people message me or call me and say ‘I ran today, and I thought of Harry,’” Smith says. These personal connections inspire and push Smith every day — as do the parallels she sees between endurance running and her son’s struggles.
“I kept thinking about how my son wakes up every day with a challenge ahead of him,” she says, “and I thought: Why can’t I take on a challenge that seems impossible, too?”
For more on Harry’s Heroes, visit harrysheroes.us. To learn how you can get involved in MDA Team Momentum, visit mdateam.org.
United Airlines New York City Marathon
March 20, 2016
April 18, 2016
Marine Corps Historic Half-Marathon (Fredericksburg, Va.)
May 15, 2016
Colfax Marathon and Half Marathon (Denver)
May 15, 2016
Michelob Ultra Chicago Spring 13.1
May 22, 2016
Boston’s Run to Remember
May 29, 2016
Rock ’n’ Roll San Diego Marathon & Half-Marathon
June 5, 2016
Thrill Seeker: An adventure enthusiast tests the limits of his abilities — and the limitations imposed by his disability
Rob Besecker, a health care marketing professional, self-professed adventurist and now author, from Illinois, was diagnosed with myotonic muscular dystrophy (MMD) in 2006, just a few years after being diagnosed with heart problems. While Besecker has experienced a lot of hardship in the ensuing years between managing his diseases and dealing with the passing of his mother, father and brother, he hasn’t let that stop him from seeking out life’s adventures.
“For me, being an adventurist is about finding enjoyment in life and just doing a variety of things,” Besecker says. “I think it’s important to set realistic and achievable goals about the different things you want to see and do, and not to let your disability get in the way.”
Over the years, that spirit of adventure has taken Besecker to every Major League Baseball stadium, to 45 of the 50 U.S. states, and to all seven continents — including exploring Antarctica and surviving an earthquake in Nepal while climbing Mt. Everest.
Besecker also has enjoyed a few adventures as a longtime MDA supporter. He has participated in MDA Muscle Walk events since 2007 and was an early supporter of MDA Team Momentum, which gives participants the opportunity to run or walk marathon and half-marathon endurance events. Besecker also shares his personal story and volunteers for Chicago-area events that are part of MDA Team Momentum.
“In 2014, we did a lot of training runs on Saturdays, and I would take my bike out and bike alongside [the Team Momentum runners] as they were training,” Besecker says. “And on race day, I went to the marathon, wore my Team Momentum shirt and tried to support everyone that was doing it.”
What advice does this serial adventurist have for other members of the MDA community?
“The sky is the limit,” Besecker says. “Your goal doesn’t have to be something athletic. It could be something as simple as seeing a movie. Whatever the case may be, everyone has different things in life they want to do and accomplish, and I challenge them to go do them. That’s what my book is about and why I support MDA.”
Rob Besecker’s new book, For Ever Strong, catalogues his amazing story of perseverance and his many adventures.
Playmaker: A high school student with DMD makes an impact through football and MDA Muscle Walk
Teagan House, a sophomore at Spaulding High School in Rochester, N.H., who has Duchenne muscular dystrophy (DMD), served this past season as captain of his school’s football team, the Red Raiders. While he enjoyed all the time he spent with friends at games and practices and supporting his teammates from the sidelines, House’s most memorable moment took place on the field.
For one game this past season, House’s coach and teammates coordinated with the opposing team to bring him into the game for a play.
“It was a surprise to me,” House says. “I found out about it that night. It was really fun and exciting. I was nervous.”
In the end, House had nothing to worry about: The play worked just as the team drew it up, and House scored his first touchdown.
According to House, that kind of support from his teammates is the norm. In addition to helping him around school with things like carrying his lunch tray, they also support House’s MDA Muscle Walk team — Teagan’s Red Raiders — at the MDA Muscle Walk of Greater Manchester. In 2015, House and his team raised more than $1,500 for MDA New Hampshire.
“I was really happy that they came out to support me and help me fight for MDA,” Teagan says.
Did you know?
This year, approximately 150 Muscle Walk events will take place across the country, featuring more than 10,000 teams and 50,000 registered participants coming together to walk and raise money for MDA. To get involved, visit mdamusclewalk.org.
Caring for Families from Day One: MDA’s clinical conference to be held March 20–23, 2016, in Arlington, Va.
MDA fights to give individuals — and the families who love them — strength, independence and life to help them live longer and grow stronger. One of the ways we do this is to care for kids and adults from day one.
To help achieve this mission priority, MDA hosts an annual conference series, with clinical and scientific conferences held in alternate years. The 2016 MDA Clinical Conference will leverage the expertise of clinicians, clinical researchers and allied health professionals across neuromuscular diseases, and will include representation from the clinical and corporate drug development arenas.
The meeting will focus on diagnostic strategies in neuromuscular disease, disease management, specialized care, and therapeutics and clinical trials.
A Passion for Politics: Derek Reeve finds his calling as mayor of San Juan Capistrano
For as long as Derek Reeve can remember, he’s lived with spinal muscular atrophy (SMA) — he was diagnosed at age 1. And for nearly as long, he’s known he had a future in politics. “Even in sixth grade, I was student body president,” he says.
Today, Reeve is mayor of San Juan Capistrano, Calif., where he lives with his wife, Jocelyn, and two stepsons.
Reeve’s passion for serving the residents of his hometown is evident, but his path to getting there wasn’t without hurdles. He worked for a law firm in Los Angeles right out of law school before moving back to San Juan Capistrano and opening up his own law practice. Around that same time, he decided to get involved in local politics and ran for city council in 2000 and 2002. He lost both times, by only 212 votes the second time. After this tough loss, he put his goal for public office on the back burner for about eight years, teaching history at a local college and practicing
But in 2010, Reeve once again decided to jump back into the fray — and this time, he won. He’s been on the city council of San Juan Capistrano ever since, and in December 2014 he was elected among the council members to serve as mayor.
Today, Reeve keeps busy campaigning, working with constituents and pursuing policies for the city — all while balancing his family life and the care needs that come with his diagnosis.
“We’re a small city by California standards,” he says. “We have about 35,000 people. A lot of what I’ve tried to achieve are small steps: keeping the traffic going, filling potholes, really basic things like that. I’ve also been working on other specific problems like the droughts and how to supply water to our residents.”
Reeve takes pride in his accomplishments as mayor but says he has even more work to do in this and future roles.
“[Our town has] such a dynamic character; just the fact that I’ve been elected to be the town’s representative means a lot,” he says. “However, I’m not planning on this being my last step. We’re going to continue going on a new journey after my time as council member is up.”
To read other inspiring stories from the MDA community, and find education and career resources, visit the MDA Transitions Center.
Pushing Up MDA: A teenager with neuromuscular disease raises funds for MDA with his black belt project
Noah Rodenfels, a 16-year-old from Ohio who has a form of congential muscular dystrophy, has been learning taekwondo since he was 8 years old and is now training to receive his black belt. As part of his training, Rodenfels is raising money to help support MDA Summer Camp through his black belt community service project.
“I chose MDA because it’s close to my heart,” he says, “and I chose summer camp because I had a lot of fun [when I attended].”
“I was so impressed that Noah took the initiative to speak with his taekwondo teacher about fundraising for MDA Summer Camp,” says Ryan Wright, MDA fundraising coordinator in Cincinnati. “At camp last year, Noah came up to me and asked for a business card. I didn’t think anything of it until a few days later when I found out Noah is shy, and that it was a big deal for him to step out of his comfort zone. He went from that shy kid to someone who has led his taekwondo class to raise funds. This is a real tribute not just to the impact MDA Summer Camp has on our campers but also to Noah’s strength and will to fight back.”
Rodenfels’ project is a collaboration with his instructors at the Asian Arts Center Taekowndo School in Dayton, Ohio. For every $0.25 donated to the project, one of his instructors will do 10 push-ups.
By mid-December, Rodenfels’ project had already raised more than $800 — prompting 32,000-plus push-ups!
Rodenfels, who participates in the same classes as his friends and even does some instructing of his own for the younger participants, says he is drawn to taekwondo because of its focus on perseverance and strength.
“For me, it is kind of challenging, but fun,” Rodenfels says.
Have an idea for a personal fundraiser? Be sure to visit MDA Your Way to start your own fundraising activity to help benefit kids and adults living with neuromuscular diseases.
Make ’Em Laugh: Shannon DeVido brings a unique perspective to the comedy world
Shannon DeVido is an actress, singer and comedian whose star is on the rise. You may know her from her recent appearances on the Hulu original series “Difficult People” or Comedy Central’s “The Nightly Show” with Larry Wilmore. But DeVido, who lives with spinal muscular atrophy (SMA) and uses a power wheelchair, is perhaps best known from her popular Web series, “Stare at Shannon,” in which she uses comedy to challenge conventional beliefs about individuals with disabilities.
In one video from her “Stare at Shannon” series, DeVido goes to a grocery store to see what kind of absurd behavior she can get away with, playing off the customers’ and the staff’s pre-conceived notions about people in wheelchairs. At one point, a fellow customer helps a deadpanning DeVido open a gallon of milk and pour it into a cup of cereal she’s holding, so she can eat it right in the middle of the dairy aisle.
DeVido’s unique brand of comedy blends wit and intelligence without taking her topics, or herself, too seriously. But she does aim to challenge others as well as herself with her work.
“I think that when you start doing something, if you do it long enough, you get into a comfort zone and stop pushing yourself,” DeVido says. “I struggle a lot with self-confidence, like any woman, not just as a woman with a disability. It’s something I would like to try to inspire people to work on, as well, and know that they are worth it.”
DeVido says her role in “Difficult People” was particularly satisfying in this respect because she auditioned and received the part even though it was not written for a person with a disability.
“I think I’m very lucky to have the opportunities I’ve had so far,” she adds. “I’m moving forward, but I don’t think I’m there yet. I’d love to star in my own sitcom. I’d love to tackle the issues of being a woman — and not necessarily the issues of a woman in a wheelchair — but being able to show that I’m a quirky, weird, funny woman that deals with issues that everyone deals with. I feel like that could break open doors for people coming after me.”
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Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.