When Jon Burcaw attended his first MDA Ride for Life in 1999 with his son Shane, who has spinal muscular atrophy (SMA), they were simply there to support the Harley-Davidson riders raising money and awareness for MDA. Little did he know that by 2007 he would be known as “Smilin’ Jon” and have his own Harley with a special sidecar that makes entering and exiting easier for individuals with disabilities. “[My first Ride for Life] made me smile, and I’ve been pretty much stuck that way ever since,” Jon says.
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Carden Wyckoff, a 24-year-old professional with facioscapulohumeral muscular dystrophy (FSHD), went on her first piggyback adventure in 2015 when her brother Spencer carried her on his back through the Reebok Spartan Sprint, a tough three-mile obstacle course. After their second Spartan race in 2016 — and after Spencer appeared on national TV on “American Ninja Warrior” — Carden and Spencer were approached by a friend who had co-founded the travel company Vestigo.
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Nine-year-old Lily Sander doesn’t remember life without Charcot-Marie-Tooth disease (CMT), but she has never let it hold her back. After undergoing major foot surgery three and a half years ago to correct the extreme curving of both feet caused by CMT, Lily had to learn how to walk again. She now walks with the help of leg braces and has been thriving.
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An upcoming Friedreich’s ataxia (FA) Patient-Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA) is your opportunity to tell the FDA and drug developers about challenges and burdens you have experienced with FA, and share your thoughts about what is most important to you in evaluating potential new treatments for the disease.
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Dwight Koeberl, M.D., Ph.D., a pediatric medical genetics specialist at Duke University Medical Center in Durham, N.C., attended his first MDA Lock-Up six years ago as a guest. “I saw a patient at the clinic [whose family] was doing the MDA Lock-Up,” he says. “After I attended that with them, I have a sneaking suspicion they mentioned my name to MDA [as a potential Lock-Up participant], and that was how I got involved.”
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Some students with complex physical or cognitive needs have Individualized Education Plans (IEPs), and some have 504 plans (named for Section 504 of the Rehabilitation Act of 1973), while others may not elect to use these plans. Both plans are intended to assist students in gaining access to a free appropriate public education, but there are differences between the two methods. Here are some tips on how to choose a plan and implement it to improve your child’s educational experience.
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My understanding of the concept of independence recently blew up in my face. Part of independence, for me, has been my ability to live on my own. In fact, I live 1,200 miles away from any relatives. Sure, I cannot walk very far, but a massive part of embracing my freedom has been my ability to drive, to travel and to go where I want when I want.
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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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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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Researchers are looking for 220 people with ALS and 30 people who do not have ALS from around the country to participate in the ALS AT HOME (ALS Testing through Home-Based Outcome Measures) study. The aim of the study is to assess whether ALS patients can reliably measure disease progression from home, with the goal of changing the way clinical trials for ALS are performed. The hope is to be able to reduce the number of patients that have to be enrolled in a trial in order to reduce the length of the testing process. In addition, if the study shows that individuals with ALS are able to reliably measure their disease at home, future trials could be designed to include patients who do not live near a study center.
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