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When Peter and Maggie Dion were both diagnosed with muscular dystrophy at the age of 10, their parents were told there were so many variations in the disease that doctors "ran out of letters in the alphabet" to find them, their father tells the Washington Post.
There's currently no cure for the disease, which is progressive and causes muscles to atrophy, and there are currently no drugs available to treat it.
"Without the Rare Pediatric Disease Priority Review Voucher Program, Maggie and Peter's parents say their chances of getting treatments for their kids becomes almost impossible," Rep.
Mike Doyle, a Democrat on the House Energy and Commerce Committee, says in a press release.
The PRV program allows eligible children with rare diseases to get priority review by the FDA for drugs that could save their lives.
But the program is set to expire at the end of September, and Doyle wants to extend it for another five years to give the FDA more time to review new drugs and to make sure they're studied for children with cancer, as well as for rare diseases.
The Dions, who live in Bellingham, Wash., say they've been fighting for years to get the program renewed, and they've been at many of the committee's hearings to share their story
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A customized collection of grant news from foundations and the federal government from around the Web.
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Together TV, the Channel that Helps You Channel Your Inner Good
Caroline Diehl is a serial social entrepreneur in the impact media space. She is Executive Chair and Founder of the UK’s only charitable and co-operatively owned national broadcast television channel Together TV, the leading broadcaster for social change runs a national TV channel in the UK and digital platform which helps people find inspiration to do good in their lives and communities.
