FDA Approves KYGEVVI®, the First and Only Treatment for Thymidine Kinase 2 deficiency (TK2d)

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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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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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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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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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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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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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Champion the Cause

Are you excited about the progress we are making in bringing strength, independence and life to individuals with neuromuscular diseases and their families?This holiday season, please remember to put MDA on your list. Please join us in supporting the important work being done to find research breakthroughs across diseases that accelerate treatments and cures; care for kids and adults from day one at more than 150 MDA Care Centers; and empower families with services and support, including equipment assistance, support groups and MDA Summer Camp for kids.

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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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From Self-Denial to Self-Acceptance

I was diagnosed with spinal muscular atrophy (SMA) at 18 months. I was pretty fortunate that my doctors said that I looked strong, and the quality of my life would be determined by every milestone I surpassed. However, they couldn’t foresee how I’d react to my own disability throughout life. When I was young, all I wanted was to be what I considered “normal” or “typical.” I wanted to be like everyone else. With that said, I was blessed with two parents and other special people in my life who always told me I was beautiful, I could be anyone I wanted to be, and my disability never had to define me because I could define it. But my own voice said differently. 

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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 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 programs are only available in the U.S.

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