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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.
'Safety, compassion, innovation': Beaufort Memorial honors top staff at Bemmy Awards.The Quality Services department took home the award for Department of the Year at BeaufortMemorial Hospital's...more
This ranking recognizes the leading children's hospitals in the U.S., featuring the top 50 hospitals.Cleveland Clinic Children's placed in all eight pediatric subspecialities: Cardiology and Cardiac...more
Mackinac Policy Conference left early childhood education off this year's agenda.By 2027, make Detroit a city that puts young children and families first, says James Ribbron, executive director of...more
Investing in tech to help children and communities thrive | Takeda Stories.How our Global CSR Program helped empower diverse entrepreneurs to innovate health solutions.29 Digital public goods...more
Greg Bourke is the author of "Gay, Catholic, and American: My Legal Battle for Marriage Equality and Inclusion" Bourke spoke at the Yale School of Management's Social Impact Lab.Bourke's final advice...more
Tesla plans to deploy a small fleet of robotaxis in Austin in the coming weeks.Tesla FSD 13.2.9 will still run a kid down while illegally blowing past a stopped school bus with red lights flashing...more
Awarded funding will support a wide range of activities between now and September 30, 2025.The FCCN initiative, supported by $85,000 in grant funding, will help build and sustain a Family Child Care...more
The Delivering Innovative Vocational Education through Virtual Reality Technology new workforce training program aimed at preparing individuals with disabilities for the program.DIVE-VRT delivers...more
Children are growing up surrounded by screens, apps, and smart devices.Being intentional about tech use goes a long way toward deepening interest in tech and creating meaningful experiences.Creating...more
Safeguarding innovation and trade secrets in American AI leadership Safeguarded innovation andtrade secrets in U.S.AI leadership.Testimony was given before the House Judiciary Subcommittee on Courts,...more
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