Access MDA Summer 2016
News and updates from the MDA community
A Strong Team: Friends and family rally for Tampa Bay family, help lead largest local MDA Muscle Walk team
When Jessica Aviles’ son Gabe was diagnosed with Duchenne muscular dystrophy (DMD) in November 2015, it was a complete shock.
“I literally knew nothing [about the disease,]” Aviles says. “I had to look it up in the parking lot.”
Over the next six months, Aviles went from knowing nothing about DMD to heading the largest Muscle Walk team at the MDA Muscle Walk of Tampa Bay. Early on in her research, Aviles came across MDA and Muscle Walk and decided to get involved so she and her family could join and support MDA’s cause.
“It’s frustrating that you can’t really do anything,” she says. “It feels like a hopeless situation for a parent, and short of praying, we can do zero. But, we can raise money for people who might be able to help Gabe.”
So Aviles created Team Gabe and started selling T-shirts with ‘Team Gabe’ on the front and ‘68’ (referring to the exon number missing in Gabe’s diagnosis) on the back. Once Aviles shared her Muscle Walk plan with her family, friends and local church, she found an incredible amount of support.
“We had family fly in from Puerto Rico,” she says, “and we had a cousin drive nine hours. My mother-in-law who lives in Puerto Rico couldn’t be there, but they organized a walk in San Juan on the same day. We have cousins in North Carolina and Alaska who all wore their Team Gabe shirts at the same time.”
While Team Gabe raised more than $3,000 at the MDA Muscle Walk of Tampa Bay, for Aviles the sense of community she experienced was the highlight.
“It was so much fun, and so great to be around other people walking the same walk as you,” she says. “It’s a rare disease, and sometimes it’s kind of isolating. It was great to be around other people who had been doing it so much longer than us and to get emotional support from them. The whole atmosphere at the park, it wasn’t a pity party — it was a celebration.”
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. Visit mdamusclewalk.org to find a walk near you and register today.
For Tom Seboldt, vice president of merchandise at an auto parts company in Missouri, the MDA Lock-Up has become an annual tradition. Since 2004 Seboldt has been an MDA jailbird to support his goddaughter, who has Charcot- Marie-Tooth (CMT) disease, as well as other friends he knows with families affected by neuromuscular disease. In the past 12 years, he has personally raised a staggering amount for MDA: upwards of $140,000.
Seboldt credits his network of co-workers, friends and families for supporting him and helping his donation totals reach such incredible heights.
“I’m able to reach out every year and thankfully every year [my supporters] give similar amounts, and they’re very supportive,” Seboldt says. “Some of them have family members or friends affected by muscular dystrophy, so they support me and the cause.”
Heading to the Lock-Up in Springfield, Mo., and turning in his bail money has become a yearly ritual for Seboldt.
“I just always enjoy seeing all the MDA staff and the people I know every year,” he says. “We get to catch up, and it’s one of the only times we see each other. They have a little lunch, everybody gets their picture taken. It’s a neat social deal.”
And, of course, beyond the activities of the day, Seboldt enjoys knowing his efforts have gone to a good cause and to helping kids and adults live unlimited.
“More than anything, I hope [my fundraising] can help anybody that has a problem that MDA can help with,” he says. “The money we help raise really helps the people who need support and services, and that’s important.”
If you — or someone you know — want to go behind bars for MDA, please visit mda.org/lockup.
A few years ago, Kevan Chandler, a 30-year-old postproduction editor with spinal muscular atrophy (SMA) from Fort Wayne, Ind., was hanging out with his friends when one of them brought up urban spelunking. This activity is exactly what it sounds like: underground exploration in an urban environment, such as tunnels or sewers. Chandler hadn’t heard of urban spelunking at the time, but his friends encouraged him to try it. Because Chandler uses a wheelchair, they had to find a way to carry him.
“I think the biggest challenge was making the backpack [to carry me],” Chandler says. “It was very makeshift.”
The backpack may have been makeshift, but it worked, and soon Chandler and his friends were exploring the underground and sewers of North Carolina, where he was living at the time.
“It was really cool,” he says. “It’s not like we had any creepy experiences — we can’t say we found an alligator or something like that — but it was just the fact that it was something I never thought I would see or experience. If you’ve ever watched the old Teenage Mutant Ninja Turtles, it was kind of like that — cold, wet and dark. We’re guys; we like that stuff.”
Chandler has always been a traveler. Growing up, he lived in Florida and North Carolina, and he visited Toronto, Vancouver and California with his family. But the urban spelunking got him thinking about exploring other places he never thought he could visit.
“The fact that we did that really opened up my mind to not really dismissing any ideas,” he says. “Before that it would have been me and my friends talking about how cool it would be to try this, but we never would have actually done it. So when I thought it would be great to go to Europe and [using this backpack] is the way we could do it, I didn’t just shrug it off.”
Chandler had always wanted to go to Europe and this gave him the perfect opportunity. In order to get his dream off the ground, Chandler and his friends created We Carry Kevan, a GoFundMe project and website to raise money for a three-week journey over the summer. Their itinerary included France, where they would attend the Django Reinhardt Music Festival; England, where they would hike the countryside; and Ireland, where they would climb the mountain Skellig Michael.
While he was certainly looking forward to those experiences, before he left, Chandler told Quest that he was most excited about the challenge of being thrust into new, unknown environments.
“I think SMA, and MD as a whole, is a really difficult disease,” he says. “It’s a challenge to live with, but it’s definitely possible. And I think sometimes we find a comfortable spot, we find a routine that works so we stick with that. Something I’m really excited about is [this trip] is going to shake that routine. It’s terrifying, but I’m going for it.”
The ability to access air travel impacts many aspects of life — from the kind of job you can have and where you can live, to whether you can access a provider or participate in a clinical trial that is far from home.
While the Air Carrier Access Act (ACAA), now 30 years old, requires equal access to travelers with disabilities, there is still much work to do to make air travel truly accessible. To that end, MDA is working with policymakers, travel advocates with disabilities, families and airlines to support measures that will make airplanes even more accessible. MDA also is participating in the Transportation Security Administration’s (TSA) Disability Coalition and in the Department of Transportation’s (DOT) negotiated rulemaking process.
MDA is supporting legislation that aims to improve the air travel experience for people with disabilities by studying in-cabin wheelchair restraint systems, identifying best practices in airport accessibility, examining training policies, and creating an advisory committee to investigate and report on the needs of passengers with disabilities for Congress.
Passing on the Knowledge: Dr. Raymond Huml and his daughter, Meredith, collaborate on a new guidebook covering muscular dystrophy
When Dr. Raymond Huml, scientist and drug researcher, first found out his daughter Meredith had facioscapulohumeral muscular dystrophy (FSHD) in 2003, he started looking for information on the disease. He was surprised to find that most of the information out there was highly technical in nature and generally not very useful to the average family trying to learn about muscular dystrophy.
As years went by, Dr. Huml would get questions from fellow families dealing with a muscular dystrophy diagnosis, and he recognized that there was a need for a book about muscular dystrophy, written in plain English. Dr. Huml was familiar with the publishing process, so he decided to spearhead the project himself.
“I had written several other books, so I thought I should take these skills and do it for people with muscular dystrophy,” he says. “But I thought I really couldn’t write this by myself, because I’m not a physician and I don’t have experience on all the topics.”
So Dr. Huml sent out a mass email to caregivers and experts he knew, asking if anyone was interested in contributing to the project. Most of them were and contributed chapters on their areas of expertise.
Among the contributors to the book, Muscular Dystrophy: A Concise Guide, is Dr. Huml’s daughter Meredith, now a 23-year-old student and writer.
“[My dad] told me about the book and asked if I was interested, and I was,” Meredith says. “We both agreed patient advocacy would be the best topic for me to cover.”
Patient advocacy is an important topic to Meredith, because she realizes that for many people with muscular dystrophy — including herself — their knowledge of the disease comes mainly from personal experience.
“From a patient’s perspective, educating yourself on your muscular dystrophy is important,” she says. “A lot of people I meet haven’t heard of muscular dystrophy, and a lot of [other people with MD] I’ve met don’t know a lot of people with MD. For me, it was important to be open about it, ask for help and realize the importance of reaching out to others for them and for yourself.”
Meredith’s chapter, titled “U.S. Patient Advocacy Groups,” covers these issues and details resources available for people with each type of muscular dystrophy. These resources include local and national organizations, such as MDA and its network of Care Centers, and community groups that provide support. Meredith concludes her chapter with her personal story and tips for patients about connecting with advocacy groups and living life with muscular dystrophy.
Now that the book is available, Meredith is planning to do more writing, but that isn’t the only way she wants to get more involved in the community.
“I was a dancer from when I was 3 years old up until my senior year of high school when I had to give it up,” she says. “I’d really like to do something with that. I was thinking about how cool it would be to start a dance studio for kids with mental and physical disabilities. When I was dancing, I was the only one dealing with that in class. It would be really cool for kids with disabilities to have a place to go.”
To learn more about Dr. Huml and Meredith Huml’s book, Muscular Dystrophy: A Concise Guide, visit springer.com. You can also read a blog post about the book by Laura Hagerty, an MDA scientific program officer, titled New Resource a 'Muscular Dystrophy Road Map' for Families.
In It for the Long Run: Carol Anne Taylor raises money and runs in honor of her husband with inclusion-body myositis
For Carol Anne Taylor, crossing the finish line at the Boston Marathon in April as part of MDA Team Momentum was an overwhelming emotional experience.
“It was breathtaking,” she says. “It’s hard to describe and put into words. I saw myself — and I told my husband, Sterling — I’ve never seen myself smile like that.”
Taylor’s husband of three years, Sterling Procter, was diagnosed with inclusion-body myositis (IBM) in 2009. Taylor and Procter had known each other for years through the Dallas music scene but only began dating in 2012.
“She is absolutely wonderful and the best medicine possible,” says Procter.
Taylor is a longtime runner and had run in marathons for other charities in the past, so she was excited to learn about MDA Team Momentum and combine her passion for running with her support for her husband.
“I thought, ‘Oh my goodness, I can run a marathon in honor of Sterling,’” she says.
And not only did she finish the Boston Marathon in Procter’s honor, but she also raised more than $13,000 for MDA in the process. However, it wasn’t the fundraising that made Taylor so emotional after she finished; it was the incredible support she felt for herself and her husband while she ran.
“I cut a little portion of the bib they give you and wrote on it: ‘This one’s for Sterling,’” she says. “Throughout the race, people were saying ‘Go Sterling,’ and every time his name was yelled out I thought ‘I’m Sterling today, I’m running for him.’”
Procter wasn’t able to attend the marathon with Taylor, but he did watch remotely via the event’s livestream on the Web.
“I’m watching the lead runners and the packs and I thought about how Carol Anne will be running along here soon, and I could see what she would be seeing and what she would be doing,” says Procter. “This whole process has meant a great deal; she’s so wonderful. I don’t need to hear thousands of people to cheer her on, but I love it all the same.”
After her amazing experience in Boston, Taylor plans to continue running for MDA Team Momentum in future marathons. She is already preparing for the Bank of America Chicago Marathon this October and already has entry into the New York City Marathon in November.
“I just checked my page, and the funds are already rolling in for Chicago,” says Taylor. “It’s just amazing for me, and I feel like we’re inspiring and making a difference in people’s lives.”
Team Momentum Upcoming Events
Get out and walk or run with MDA Team Momentum at any of these upcoming premier races. Some of the races sell out and MDA Team Momentum has limited entries. Register today at mdateam.org.
Bank of America Chicago Marathon
Sunday, October 9, 2016
Rock N Roll Denver Half-Marathon
Sunday, October 16, 2016
Marine Corps Marathon & 10K
Washington, D.C., Sunday,
October 30, 2016
TCS New York City Marathon
Sunday, November 6, 2016
Dallas Marathon & Half-Marathon
Sunday, December 11, 2016
Miami Marathon & Half-Marathon
Sunday, January 29, 2017
Educating and Supporting Families with Becker Muscular Dystrophy
On Sept. 24, 2016, MDA will present the National Becker Muscular Dystrophy Conference at Children’s National Medical Center in Washington, D.C. The 2016 conference will include presentations on clinical care, research updates, information on clinical trials and panel sessions. There is no charge to attend the conference, but registration is required. The conference is open to all individuals with Becker MD, their families and friends. A social gathering will take place on the evening of Friday, Sept. 23.
To learn more and to register, visit mda.org/conference/BMD/2016.
Sharing Our Strength
Read stories from around the MDA community — and share your own — on Strongly, the MDA blog. Here you’ll find everything from personal posts by people living with neuromuscular diseases to the latest research news and fun videos. If you’re interested in blogging or sharing your story on Strongly, contact us at email@example.com.
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MDA Resource Center: We’re Here For You
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.