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Nobody tells you the good part of life with muscular dystrophy
In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MDAwarenessMonth, or read the full…
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Disability inclusion and emergency-preparedness policy post-9/11
I’m writing these words as we pass the 25th anniversary of the terrorist attacks of 9/11. Those of us old enough to clearly remember that day, and the days that followed, remember a nation and a world that was profoundly changed. Volumes have been written, studied, and analyzed in the quarter century since that terrible…
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Quest Podcast: More CMT Clinical Trials Than Ever Before: Inside the Research Turning Point
In this episode of Quest Podcast, we chat with Sue Bruhn, PhD, CEO of the Charcot-Marie-Tooth Association (CMTA); Stephan Züchner, MD, PhD, Chief Genomics Officer at the University of Miami Miller School of Medicine; and Brian Lin, PhD, Senior Research Portfolio Director at the Muscular Dystrophy Association. Together, they break down what Charcot-Marie-Tooth disease (CMT)…
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PPMD Celebrates Patient-Centered Advocacy at RAPS Convergence 2026
Earlier this week, PPMD joined global regulatory professionals, patient advocates, industry leaders, and others from across the healthcare community at RAPS Convergence 2026 in Charlotte, North Carolina. This year marked the 50th anniversary of the Regulatory Affairs Professionals Society (RAPS), and served as an opportunity for PPMD to celebrate the importance of patient-centered advocacy and…
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Transitioning my son from pediatric to adult DMD care is scary
Last week, I traveled with my sons Max, Rowen, and Charlie to Colorado for their multidisciplinary neuromuscular clinic visit at a children’s hospital. My husband and I typically don’t both travel with the boys, so one of us can stay home with our younger daughters. This time, it was my turn. I share seven children…
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Newborn Screening & Early Access to Treatment: The Rogers Family SMA Story
SMA testing was added to the federal Recommended Uniform Screening Panel (RUSP) in July 2018, but was not adopted in all 50 states until 2024. Newborn screening plays a pivotal role in early diagnosis and the opportunity to begin the right treatment and access clinical care within weeks of birth, sometimes before symptoms have even…
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MDA Engage: Keynote speaker Mindy Henderson redefines the impossible
Mindy Henderson has spent much of her life challenging the limits others have placed on her. When she was diagnosed with spinal muscular atrophy (SMA) — a genetic condition that causes muscles to weaken over time — as an infant, doctors told her parents that she might not live long and that school was not worth…
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Honoring the life and legacy of my brother, who had LGMD
In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MDAwarenessMonth, or read the full…
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FSHD is making it increasingly difficult to move my body
Facioscapulohumeral muscular dystrophy (FSHD) and other health issues make it difficult for me to move these days. It’s hard to reposition myself when I’m sitting down. Standing to transfer now requires a seat that’s 22 inches or higher. It’s challenging to turn my feet to move from my wheelchair to the front seat of our…
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A new film reminds us of the importance of disability representation
A few days ago, my friend Reena Deen, a disabled independent filmmaker with complex post-traumatic stress disorder and dyslexia, shared with me that her film “The Damned Ones” was selected for the After Dark Program at the 2026 Torino Underground Cinefest. “The Damned Ones” is a mystery thriller about a blind university student named Siti…
