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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
Selected Grant News Headlines
A customized collection of grant news from foundations and the federal government from around the Web.
Schools have largely been spared Disruptive Innovation of the sort that has transformed everything from retail to consumer package goods, telecommunications, computing, steel, newspapers, and...more
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Schneider Electric highlights AI-driven growth, data centre demands, and sustainability ahead of Computex 2025 launch.Schneider Electric discussed AI's rapid growth and its demand for electricity,...more
Mary Ann Wolf is president and executive director of the Public School Forum of North Carolina.Wolf: In local public schools across North Carolina, millions of students receive breakfast and lunch at...more
Oti - the Israeli Autism Association, is advancing the development of children and adults on the autism spectrum.Recent years have witnessed a profound transformation in our understanding of autism...more
COPEMA seeks to mobilise parliamentary support to increase domestic funding and ensure effective implementation of malaria control strategies.The disease accounts for approximately 600,000 deaths...more
MP Tourism Unveils Immersive Zone at KidZania Showcasing the State's Top Attractions.The Madhya Pradesh Tourism Experience Center was officially inaugurated at Kid Zania Mumbai.The initiative is...more
The Momentum Spine App enables radiation-free assessment and provides digital models of the patient's spine.The smartphone app technology starts with parents taking videos of their children at home...more
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Spotlight
When it Comes to Social Enterprises, Failure is the Best Platform for Innovation
In the world of social enterprises, failure is a cringe-worthy moment nobody wants to talk about. But, social entrepreneurs can benefit from their failures.
