Featured Articles
Landmark Decision Brings Hope for Continued Progress, Momentum in 2017
An important win for all individuals and families living with muscular dystrophy, ALS or one of the related neuromuscular diseases that MDA fights occurred Sept. 19, 2016.The U.S. Food & Drug Administration (FDA) granted accelerated approval to eteplirsen (brand name Exondys 51) for the treatment of some forms of Duchenne muscular dystrophy. This is an outcome MDA dreamed of decades ago when we first invested in the research to identify the cause of DMD and then took the risk to be the first to invest in a breakthrough exon skipping research project that led to development of this drug (see Progress Now). It is the first of what we know will be many disease-modifying drugs for DMD.
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Running for a Reason
Ava Illingworth picked up running two years ago as an outlet to burn off some of the stress from her job installing software and interfaces for health care organizations. It wasn’t the most likely stress reducer for her, considering she has been living with Charcot-Marie-Tooth disease since she received the diagnosis in 2009 at the age of 35.
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Finishing Strong at MDA Muscle Walk
Every year in hometowns across America, MDA Muscle Walk participants of all ages and abilities make their way through a 1- to 3-mile wheelchair friendly course for a good cause. But this is more than a fundraising walk. Here are excerpts from the Strongly blog about why people participate in this life-changing event.
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Calling the Shots
Sports have always been a big part of Jermia White’s life. White, a 23-year-old sports statistician from Dallas who has spinal muscular atrophy (SMA), remembers watching her father coach basketball when she was 9 years old, and she went on to be a cheerleader, a manager for her high school basketball team and sports editor for her school’s newspaper. Before she went off to college, she knew she wanted to be involved with sports, but it wasn’t until she got to Dallas Baptist University that she figured out the right fit.
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Progress Now Fall 2016
In August, MDA awarded nearly $7 million in new research grants, supporting 25 new research projects around the world to accelerate treatments and cures. With 41 grants awarded earlier this year, MDA’s investment in new neuromuscular disease research projects totals more than $17 million for 2016.The new research projects underway are expected to build learnings and create positive outcomes that cross disease borders and impact the greater neuromuscular disease landscape.
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MDA Muscle Walk: Moving Your Muscles
Members of the MDA community across the country have come together to walk a staggering amount in the name of neuromuscular disease research this year. In 2016 alone, there were:• 145 Muscle Walk finish lines crossed• More than 280 miles of Muscle Walk routes• 48 participating states• 363 hours of Muscle Walk events
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Living Social
Months after Staci Hayes gave birth to her daughter, she began to suspect her extreme exhaustion was not normal. “How I felt went beyond [the idea that] I have a newborn and I’m tired,” says Hayes. After consulting with doctors and undergoing a range of testing, Hayes received a diagnosis of myasthenia gravis (MG). At the age of 40, every aspect of her life changed. Her 20-year career as a nurse ended, her marriage fell apart, and she became a single parent with a 3-year-old child.
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Flying High
Joe Feidt’s 40-year love affair with the sport of disc golf began as a happy accident. Feidt, a 66-year-old writer and editor for DiscGolfer magazine who has inclusion-body myositis (IBM), first discovered the sport in 1976 at a Frisbee tournament in Minneapolis. As it happened, one of his best friends from college was already on the pro Frisbee tour, and he encouraged Feidt to get involved.
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The Heart of Care
When a couple vows to share their lives — whether or not they express that commitment before an authorized officiant — there’s a traditional phrase that holds particular pertinence when one partner is both mate and primary caregiver for the other. It’s the line about loving one another for better, for worse, for richer, for poorer, in sickness and in health.
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Walking Strong
When Tia Blankenship was diagnosed with Charcot-Marie-Tooth disease (CMT) in 2002 at the age of 23, she was told she wouldn’t be able to walk by the time she turned 35. This past April, at the age of 37, Blankenship walked both the 5K walk and the 1-mile walk at the MDA Muscle Walk of Tampa Bay (Fla.).
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Independent Pro
Like many of us, 25-year-old Lauren Carter’s path to her chosen career took a few turns along the way.“I was definitely one of those students all throughout high school who was constantly changing my mind about what I wanted to do with my life,” Carter says. She considered becoming a doctor or a lawyer, as well as a cook, even though she admits to being terrible at cooking.
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