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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.
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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.
