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A Lifetime of Learning: From college to a Career in Disability Advocacy
I’ve always known that I love to learn. That passion has taken me places I never expected and set me on a path toward making a difference in advancing disability rights. Thriving in college When I was in high school in Clarksville, Maryland, I knew I wanted to attend a four-year college, and I worked…
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The week we ran out of our emotional ‘leftovers’
When I was a young mom watching my oldest daughter, Lexi, move from upper elementary to middle school, I often felt heartbroken and helpless. She was an excellent student and friend at school, but when she came home, her exhaustion could turn into crankiness, and it felt like she was shutting me out. A friend…
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The Hidden Power of Self-Care in Caregiving
Caregivers often give so much of themselves that sometimes their own needs fade into the background. Yet the stories shared here reveal a powerful truth: Caring for yourself is not selfish — it’s essential. Each of the caregivers featured here has learned that strength is built in the pauses — a moment of quiet, a…
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Meet Our 2025 MDA Quest Photo Contest Winners
Power play Congratulations to our 2025 Quest Media photo contest winner, Paula Saxton, of Doylestown, Pennsylvania, who submitted this photo of her son, Jake. Sports photographer Karla Donohoe captured this moment of celebration after Jake scored a goal in the opening game of the 2025 North American Powerhockey Cup. His team, the Philadelphia Flyers PowerPlay,…
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FDA Approves New Safety Warning and Revised Indication for ELEVIDYS
Today the FDA announced a significant update to the labeling and indication of ELEVIDYS for the treatment of individuals living with Duchenne following reports of death based on acute liver failure (ALF) in non-ambulatory patients treated with the product. This comes after Sarepta shared in July 2025 that the agency requested and the company agreed…
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Protected: PPMD Continues to Drive Progress with Your Support
This content is password protected. To view it please enter your password below: Password: The post Protected: PPMD Continues to Drive Progress with Your Support appeared first on Parent Project Muscular Dystrophy.
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Long-term Agamree data show better growth, lower fracture risk
Agamree (vamorolone), a type of corticosteroid approved to help preserve muscle function in people with Duchenne muscular dystrophy (DMD), appears to work as well as traditional corticosteroids at maintaining walking ability, but carries a lower risk of side effects such as broken bones, eye problems, and stunted growth. That’s according to a new analysis announced…
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MDA Ambassador Guest Blog: How Finding Community Helped Me Face the Fear of Having My Son Tested for CMT
Kevin Crowley is a 48-year-old father of two, husband to the most beautiful woman in the world, dad of a yellow Labrador Retriever, and a coach of the world’s greatest 5th-6th grade youth football team. He was diagnosed with Charcot-Marie-Tooth disease (CMT)1A in his late 20’s. He lives with depression and PTSD and is also…
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Dancing to the beat and singing to the melody to find a cure for FSHD
I’m a member of the Western Pennsylvania chapter of the FSHD Society, which serves as a support group and a partner in the nationwide Walk & Roll to Cure FSHD campaign aimed at raising funds for the search for a cure for facioscapulohumeral muscular dystrophy (FSHD). The Walk & Roll campaign strives to raise about…
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Clinical Research Opportunity: Phase 3 Study of Cladribine in People with Generalized Myasthenia Gravis (gMG)
Researchers at EMD Serono Research & Development Institute, Inc. are working to better understand generalized myasthenia gravis (gMG) and study effectiveness of a potentially new treatment. The study People who have generalized myasthenia gravis (gMG) may be eligible to participate in a phase 3 clinical trial to evaluate the safety and efficacy of the investigational therapy…
