After learning devastating news about our young son, we needed to feel connected to friends and family, not just exist beyond their imagination.
Category: Muscular Dystrophy
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F.D.A. Sharply Limits Use of Drug Linked to Two Teen Deaths
A gene therapy for Duchenne muscular dystrophy caused complications to the liver, prompting a review of its use for younger patients.
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RFK Jr. Accuses FDA of Drug Industry Influence That Barred Alternative Remedies
The nation’s health secretary addressed agency employees, asking them to shed any corporate influence. But he did not address the mass layoffs that have gutted oversight of tobacco and vapes, food safety and drug reviews.
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‘The Remarkable Life of Ibelin’ Review: More Real Than Reality
An unconventional documentary tells the story of a Norwegian gamer — and of how we live life on the internet.
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He Doubted He’d Find ‘the One.’ She Made Him a Believer.
Danni Liu and David Choi, who was diagnosed with muscular dystrophy as a child, quickly embraced the joys and challenges in their relationship together.
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Calls for Financial Details Stall Charity Watch Auction
A social media outcry over its more than $100 million in donations led Only Watch, one of the industry’s most high-profile events, to cancel its Nov. 5 sale.
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Timepieces With a Mission
The Only Watch charity auction raises funds to tackle Duchenne muscular dystrophy, a cause close to the C.E.O.’s heart.
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‘Translators’ Help Romilly Saumarez Smith to Keep Creating Jewelry
When Romilly Saumarez Smith lost her fine motor skills, she despaired. But then she remembered that even Michelangelo worked with collaborators.
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Lauren Spencer Is a Sex-Positive Disability Influencer
The New York Times – Fashion & Style:A star of “The Sex Lives of College Girls,” she is also known for her candid YouTube and Instagram posts about life with muscular dystrophy.