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Sharing, Learning and Discovery

While it’s easy to understand how funding research and providing care for kids and adults from day one help individuals with neuromuscular diseases live longer and grow stronger, hosting conferences and facilitating dialogue also have tremendous benefits for saving and improving lives.MDA-supported conferences bring together the world’s best researchers, top clinicians, industry leaders, other stakeholders and families to share knowledge, ideas and best practices; to foster collaboration; to strategize around advocacy initiatives and to connect with like-minded individuals. These experts and influencers in the muscular dystrophy community come together with one goal in mind: to accelerate progress for our families.

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Walking with Warhorse

When Valerie Robinson came home from her first visit to her MDA Care Center in Texas after her son, Ryan, had been diagnosed with limb-girdle muscular dystrophy (LGMD) at age 14, the first thing she did was go to the MDA website and set up her MDA Muscle Walk team. “The clinic was an amazing experience, despite what we were there for,” she says. “At the end of the appointment, the MDA coordinator mentioned the upcoming Muscle Walk and asked if we would be interested in forming a team, and we just said, ‘Yes.’”

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Pursuing Your Passion

When he was younger, Andrew Baker, a 21-year-old junior at Brandeis University in Waltham, Mass., who has Charcot-Marie-Tooth disease (CMT), knew he wanted to compete. He tried baseball and soccer, but found that with his CMT he was unable to be a competitive player. Serendipitously, he was recommended swimming as a form of physical therapy, and with some encouragement from his younger sister who also has CMT, he decided to try swimming competitively.

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In Case of Emergency

Emergency situations present real challenges for individuals affected by neuromuscular diseases. For example, in February, when the Oroville Dam threatened to fail in California, downstream residents were given just one hour to leave their homes. Local news reported that a resident with a disability was left behind for hours due to lack of accessible transportation. 

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Mobility: In the Driver’s Seat

Like many teenagers, Casey Stark wanted to learn to drive when she turned 16. But living with spinal muscular atrophy (SMA) and using a power wheelchair meant that preparing for and completing a driving test required extra planning.Stark, who was a high-performing high school student, knew she could pass a written test, but she wondered how she was going to get behind the wheel. The cost of adapting a vehicle with hand controls and other driving aids was prohibitive, and she didn’t need to drive to manage her day-to-day student activities, so Stark put that dream on hold. 

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Summer Strong

Elvira, a 16-year-old with spinal muscular atrophy (SMA), has been attending MDA Summer Camp near her hometown of Amarillo, Texas, since she was 7. Between campers, counselors and other volunteers, she has made a lot of friends and memories over the years, which is her favorite thing about attending camp.

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Keeping Families at the Heart of MDA’s Mission

This is a busy and productive time for MDA and the families we serve. The unprecedented approval of three new drugs in six months to treat diseases in our program — after many years of investments with no new drugs — is proof that this is a time of great momentum in neuromuscular research. At MDA, we’re building on this progress as we push to do more to help families like yours in hometowns across America. As proof of our commitment to keep you at the heart of everything we do, here are some updates on new initiatives we’re developing for you and your family: 

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Riding High in the Saddle

Kierra Sunris, a typical 12-year-old, enjoys reading The Hunger Games, making silly faces to annoy her parents and riding horses. She rode for the first time at age 6. “I was afraid the horse would fall over. It’s kind of scary when you get on top of something that’s five feet taller than you are,” says Kierra, who has Ullrich myopathy (a form of congenital muscular dystrophy) and uses a power wheelchair. 

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MDA Research: Keeping Up the Momentum

What are the effects of steroids on muscle repair in patients with Duchenne muscular dystrophy (DMD)? How can gene therapy impact people with Charcot-Marie-Tooth disease (CMT)? Will identifying biomarkers cut down on the need for muscle biopsies for those with myotonic dystrophy (DM)?These are some of the pressing questions researchers in the neuromuscular disease field are asking — and MDA is providing support to help them find answers. Our latest efforts include the award of 29 new research and development grants to support scientists working to bring treatments and cures to MDA families.

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Fill the Boot Gets Personal

Editor's note: It's with a heavy heart that we at MDA mourn the loss of Rebecca "Becky" Fulcher, who is featured in this article. Becky, who lived with Friedreich’s ataxia and was actively involved with MDA, passed away on April 5, 2017, in an automobile accident on her way home from a concert with family members and friends. Our sincerest condolences are with Becky’s family and friends during this enormously painful time.

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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.

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