In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or…
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It’s been a big week for the Vertin Party of 9. We moved into our new home, and after only a week, the blessings seem boundless. I’m so thankful to share this because, as you can imagine, moving a large family is a tremendous undertaking. My husband, Jason, and I have…
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New treatments for muscular dystrophy (MD) are moving forward, but no single therapy will work for every MD type, and some promising therapies have fallen short in trials, two neuromuscular specialists told patients and families. “Muscular dystrophies are not just one condition,” said Ryan Jacobson, MD, a neuromuscular…
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My regular readers know that I love to play music. I’ve been performing nearly my entire life. Music began for me when I was 5 years old. My dad taught my brother, Tim, and me to play guitar and banjo. These were the right instruments for Tim, who is an…
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People living with neuromuscular diseases and their families should help shape new treatments from the very start, rather than weighing in only after key decisions are made, according to experts and community members who spoke on a Sept. 26 panel at the MDA Engage: Chicago symposium. The panel, “…
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I share seven children with my husband, Jason, including three sons who have Duchenne muscular dystrophy (DMD): Max, 20, Rowen, 17, and Charlie, 15. Most of my columns talk about caregiving and my sons with DMD. However, in our large family, many other dynamics are at play, including the…
Becoming educated and informed about muscular dystrophy is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your muscular dystrophy journey.
There is no cure for muscular dystrophy yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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