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Caregiving sometimes feels like walking a tightrope
My heart is walking a tightrope. I’m a 45-year-old wife to Jason and mother to our seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. Three of our children, Max, Rowen, and Charlie, are living with Duchenne muscular dystrophy (DMD). This year, my life has changed in…
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Life with Lily: Finding My Voice
Hello everyone! I’m so excited to launch my quarterly blog series as your 2025 National Ambassador! This first “Life with Lily” post is deeply personal, a reflection on my journey with Charcot-Marie-Tooth (CMT) disease and an exploration of the nuanced realities of the disability experience. I want to share my story, not just as a…
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MDA’s Origin Story: Grassroots Legacy
As we celebrate MDA’s 75th anniversary, you may be asking, how did this all begin? It’s no surprise that MDA started as a grassroots organization. From the earliest days, our mission has been shaped by the stories and needs of people living with neuromuscular diseases and their families. Founded in 1950 MDA began in 1950…
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2024 MDA Advocacy Collaboration Grantees are Working Towards Change
Advocacy for the neuromuscular disease community is just one of the key ways MDA works to support the neuromuscular disease community. To expand our impact and undertake projects of importance to the community, we strive to foster partnerships that advance the ability of people with neuromuscular diseases to live longer, healthier, and more empowered lives.…
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Hoyer Lifts and Beyond: Choosing the Right Lift Device
For those living with limited mobility from a neuromuscular disease or other disability, assisted transfers can be a big part of daily life. Many people who can’t stand and pivot or don’t have the upper body strength to use a sliding board independently require a transfer lift or lift system. These devices generally have a…
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First Semester in a New York Minute
Jonathan Lengel is an actor, singer, and performer best known for his role as Archie in Netflix’s Broadway Adaptation of 13: the Musical. Jonathan lives with a rare form of congenital muscular dystrophy. An MDA Ambassador since 2019, Jonathan received an inaugural MDA Scholarship in 2024. He is currently pursuing a double major in Digital…
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Patients with more siblings report being better prepared for adulthood
Adolescents and young adults with Duchenne (DMD) or Becker muscular dystrophy (BMD) who have more siblings typically report being better prepared to transition to adult life, a new study has found. Findings show people with DMD or BMD had the most difficulty with activities of daily living, education, and employment when navigating adulthood, and fewer…
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Solid Biosciences Shares Initial Data from INSPIRE DUCHENNE Study of Gene Therapy Candidate SGT-003
Solid Biosciences Inc. has announced positive initial data from the company’s Phase 1/2 INSPIRE DUCHENNE trial evaluating SGT-003. SGT-003 is a gene therapy candidate for the treatment of Duchenne that delivers a microdystrophin via their novel AAV capsid designed to increase skeletal and cardiac muscle targeting while detargeting the liver. Solid shared interim 90-day biopsy…
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MD trial update: 5 OPMD patients safely treated with gene therapy
Five people with oculopharyngeal muscular dystrophy (OPMD) — a type of muscular dystrophy marked by muscle weakness affecting the face and throat — have thus far been treated with the gene therapy candidate BB-301 in an ongoing clinical trial, treatment developer Benitec Biopharma said in a company update. According to Benitec, the fourth and fifth…
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A week in the life of an overwhelmed caregiver
I’ll be straightforward about caregiving: It’s exhausting. I’m the mother of seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. I’m also a caregiver to Max, Rowen, and Charlie, who have Duchenne muscular dystrophy (DMD). You are catching me during a challenging two-week period. My husband, Jason,…
