DETROIT (WWJ) – A metro Detroit mom is part of the race to save thousands of young men and boys from a genetic killer.

It’s called “The Race to Yes”, and it’s a national campaign by families with children diagnosed with Duchenne Muscular Dystrophy, a progressive muscle-wasting disease affecting about 24,000 boys in the U.S.

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Duchenne is 100 percent fatal, killing boys in their late teens or early 20s.

Marissa Penrod of Commerce Township is among parents frustrated because an experimental drug to treat Duchenne has shown promise over a two year clinical trial of 12 boys, but the FDA has stalled approval until it sees results from a larger trial.

“Children are dying,” Penrod said, “and our own government which is supposed to be in place to protect us is actually, by not taking action and holding up this process, they’re doing harm. It’s absolutely… gut-wrenching.”

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WWJ Health Reporter Sean Lee contacted the FDA and via email and was told by a spokeswoman that federal law prohibits the agency from discussing the status of drugs under review.

More than 100,000 people signed “The Race to Yes” petition in just 27 days, asking the White House to urge the FDA to fast-track approval the Duchenne drug.

Now the group is waiting for the White House response.

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