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"There's no choice between watching your child die young or pursuing a potentially revolutionary treatment," writes a mother whose 6-year-old son has Duchenne muscular dystrophy, a degenerative genetic disease that, until recently, guaranteed death by early adulthood from cardiac or respiratory failure.
"For parents of boys with Duchenne, dystrophin is our white whale, the life-or-death imperative no parenting manual can prepare you for."
So when her son qualified for a clinical trial of a gene therapy that introduces a smaller, functional form of the dystrophin gene, she and her husband "did not think twice."
The gene therapy, called eteplirsen, was approved by the FDA in 2016 and has since been shown to increase life span by about 20%, about five years longer than the average Duchenne patient.
"It demonstrates that a small amount of supplemental dystrophinjust 0.9% with eteplirsencan meaningfully lengthen lives," writes Erin Gloria Ryan in an op-ed for the Washington Post.
"Families know what those added years represent: more celebrations, more laughs, more stories."
But she also writes about the "arbitrary restrictions on approval of this gene therapy" that are keeping many families from
Selected Grant News Headlines
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
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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
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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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