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How to Choose a College with a Disability
When Abby Dreyer, a sophomore at Eastern Connecticut State University (ECSU), was choosing a college, she scheduled tours at ECSU and another college on the same day. Abby lives with spinal muscular atrophy (SMA) and uses a power wheelchair, so she contacted the schools ahead of time to tell them about her accessibility needs. “I…
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A medical oversight brings caregiving changes in my home
The end of the year offered up two beautiful weeks with my family and very few responsibilities. We canceled pool therapy, had no medical appointments, the kids were out of school, and I took a break from writing. We spent 10 days at home, just us. It was exactly what I needed. But the new…
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Collective Advocacy at the MDA Clinical & Scientific Conference Propels Hope and Possibility
Each year, the MDA Clinical & Scientific Conference brings together clinicians, researchers, industry partners, and community members to share knowledge, spark innovation, and move the field of neuromuscular disease forward. Alongside the scientific sessions and research updates, an equally powerful convening takes place: the annual meeting of the NeuroMuscular Advocacy Collaborative (NMAC). This gathering unites nearly…
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MDA summer camp now accepting 2026 applications
The Muscular Dystrophy Association (MDA) announced that registration is now open for its 2026 summer camp program. The program is open to kids and teens ages 8 to 17 who have muscular dystrophy or a related neuromuscular disease. Families can submit applications for their campers via an online portal. This summer, MDA will host 23…
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Entrada continues to advance multiple Duchenne exon-skipping programs
As an early investor in Entrada Therapeutics, we are pleased to share that in 2026 Entrada plans to have four clinical-stage programs in Duchenne – for individuals amenable to skipping exon 44, exon 45, exon 50 or exon 51. Exon 44: They are on track to report data from the first cohort of the ELEVATE-44-201…
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My animal companions have helped chart my life with Duchenne
Jan. 8 marks four years since my family welcomed my animal companion, Pandan, into our home to foster. Since the new year began, I have been reflecting on how such companionship enters our lives quietly and unexpectedly, and without ceremony. Pandan is a rescued street dog, known locally as a “Singapore Special,” a term for mixed-breed…
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MDA Ambassador Guest Blog: Finding My Rhythm Again: The Power of the Chair Workout
Rebecca Gregg has limb-girdle muscular dystrophy (LGMD2B), is a board member of the LGMD Awareness Foundation, and is an MDA Ambassador. She lives in Edmond, OK, with her husband, David, and two daughters, Addison and Lauren. In her free time, she makes jewelry for her Etsy shop. My family including, my husband, David and my…
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Top 10 muscular dystrophy news stories of 2025
Throughout 2025, Muscular Dystrophy News Today brought you daily coverage of the latest muscular dystrophy (MD)-related clinical research and scientific breakthroughs. Here are the year’s top 10 most-read stories we published last year, each with a brief description. No. 10 — FSHD patients sought for first EPI-321 clinical trial Enrollment has begun for a first-in-human…
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MDA Ambassador Blog: Steps of Strength: Finding Hope and Community on Our Duchenne Journey
Katie Brooks is a mom of two incredible little boys, Dominic and Daniel. She was born and raised in Austin, TX and moved to Atchison, KS to attend college at Benedictine College. She has worked in special education since 2007 and is currently an Early Childhood Special Education Coach for the Shawnee Mission School District in…
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Study finds DMD affects vascular muscles as well as skeletal ones
Duchenne muscular dystrophy (DMD) causes dysfunction of muscle cells that help move blood through the circulatory system, a study found. The changes associated with DMD included dysregulated activity of some genes and altered dynamics and structure of mitochondria, the cell’s powerhouses. “These findings highlight the importance of targeting vascular [blood vessel] abnormalities in therapeutic strategies…
