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  • A Professional and Personal Passion: Theresa Cox Mixes Business with Pleasure for MDA April 25, 2017
    It’s hard to tell when the work day ends and where the volunteering begins for Theresa Cox, who is committed in both her professional and personal life to working with people living with muscular dystrophy and related neuromuscular diseases. For nearly four years, Theresa Cox has been the MDA Care Center Coordinator at Johns Hopkins […]
  • From Summer Camp to Chicago Marathon, Robb Valentyn Goes All in for MDA April 24, 2017
    At 17 years old, Robb Valentyn began volunteering at MDA Summer Camp because of a girl. Little did he know that following his crush one summer would change his life and heart forever. Originally hailing from Little Chute, Wisconsin, Robb, now 28 and living in Chicago, is one of MDA’s most dedicated volunteers. But more […]
  • Promising results in phase 1 SMA gene therapy trial April 21, 2017
    Chicago-based biotechnology company AveXis has announced encouraging results from its completed phase 1 gene therapy trial to test the investigational therapy AVXS-101 in infants with type 1 spinal muscular atrophy (SMA). Treatment with the therapy was associated with an increased survival rate compared to the normal course of the disease and the achievement and maintenance […]
  • What is Advocacy and Why Should You Care? April 20, 2017
    Editor’s note: In advance of MDA’s first ever Advocacy Conference, taking place April 23-25, we asked several advocates to unpack the idea of advocacy: what is it, why they became advocates and why it is necessary for others to follow their examples. Their responses follow. What does advocacy mean to you? A big word with […]
  • High-School Track Athlete with Myotonic Dystrophy Finds His Stride Helping Others April 20, 2017
    Almost exactly one year ago, in the spring of 2016, Kade McCann learned he had myotonic dystrophy. For this young athlete, the diagnosis stopped him in his tracks. “It was spring of my junior year of high school. I had taken an exhaustive course load and was mentally spent. On top of that, I was […]

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