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Medical Edge: Petition to fast-track new treatment for DMD
ANDERSON TOWNSHIP, Ohio (Liz Bonis) -- A family from Anderson Township is asking for your help. They need signatures by this Friday night on a petition to push for new research in a tough disease.
It's hard not to notice three-year-old Mason Diersing's spirit and spunk, "I see a lot of myself in him, always wanting to kick the soccer ball, throw the baseball, just always, always being active," says dad Kevin Diersing.
That activity may be tougher as Mason grows up. A few months ago he was diagnosed with what's called DMD. "It stands for Duchenne muscular dystrophy, it's the most common childhood muscular dystrophy.
DMD causes the muscles to shut down over time according to neuromuscular specialist Doctor Brenda Wong.
To his family that means, "play baseball, play soccer those are things I think you can say okay we don't get to do that, but not being able to feed himself, or go up steps or drive a car, things that everybody takes for granted. To hear that at 16-years-old, for your son it will feel like a 15 pound weight to pick up a fork you think, shoot, how can that be?"
So now they are doing everything they can to raise awareness of DMD. Part of the reason they want to share his story, isn't just so that you can learn more about this disease, it is so that you can make a difference. They are fighting for some new research and there is a special petition online.
It simply asks you to urge the FDA to say yes to accelerated approval for safe, effective therapies for children with Duchenne. "The petition was started by a grassroots organization, The Race to Yes. It's a bunch of mothers who have known that there children have had this for many years.
You see right now most of the research has focused on the use of medications such as steroids for DMD, but even Doctor Wong admits "we want to see the day where there is a drug that is approved besides the current steroids that we are using just to slow the disease progression."
So the petition is a request to the fast-track some newer therapies which normally take a lot of approval time. His mom points out, children such as Mason, don't have a lot of time. "Obviously when you're involved in something like this, you jump in with both feet and your whole heart to make sure that these boys get the medication that they need."
Link to the petition
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