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Ullrich Awareness Day
Finally, after years of battling and campainging, we now have an official Ullrich Muscular Dystrophy […]
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Protected: FDA Approval of ELEVIDYS: Key Takeaways from the CureDuchenne Webinar
This content is password protected. To view it please enter your password below: Password: The […]
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What I want people to know about FSHD and its progression
As I was finishing up a recent interview with the host of “FSHD Radio: Straight […]
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Twins offer insights into DM1 cognitive deficit contributors
A pair of identical twins with myotonic dystrophy type 1 (DM1) were found to have different […]
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PPMD 2024: Gene therapy trials recruiting patients around the world
With the first gene therapy for Duchenne muscular dystrophy (DMD) now approved in the U.S. […]
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In the dance of who does what with Duchenne, it’s OK to ask for help
“What can I do to help?” It was my husband’s answer to the long rant […]
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PPMD 2024: Trials due for DMD gene therapies, cell regeneration
In its 30-year history, Parent Project Muscular Dystrophy (PPMD) has helped fund the development of […]
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PPMD 2024: 4 therapies aiming to slow DMD progression now in trials
Four experimental treatments — deramiocel, sevasemten, satralizumab, and tadalafil — all in clinical testing and […]
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A rough month makes me grateful for what I’ve got
Last month was tough for me. Although celebrating my partner’s birthday on June 12 was […]
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FDA APPROVAL OF ELEVIDYS
This webinar discusses a groundbreaking gene therapy treatment for Duchenne Muscular Dystrophy (DMD), focusing on […]
