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In this episode of the Quest Podcast, we chat with Kiersten Riggs, a 24-year-old rare disease advocate from Tulsa, Oklahoma, who was a varsity cheerleader when her family first heard the words Friedreich’s ataxia (FA). Kiersten opens up about being diagnosed alongside her older sister, the four years she spent hiding from the FA community…

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Last Friday, my girlfriend, Amanda Yip, and I celebrated the second year of Rebirth Ensemble, the disability-led creative business we founded in Singapore in October 2024. We began with an ambition: to make art more accessible. Now, we’re exploring creative storytelling, multisensory art, and accessibility consultancy. Yet the biggest change hasn’t been our business path;…

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Every March, the leading clinicians and researchers in the field of neuromuscular disease join industry partners, advocacy organizations, and community members at the MDA Clinical & Scientific Conference to share their expertise on the exploration of new treatments, groundbreaking research, and clinical accomplishments. The conversations and presentations that occur at conference on topics related to…

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Mental health problems such as anxiety and depression are common for people with muscular dystrophy, affecting most individuals in the community, according to a new survey. The survey was carried out by Bionews, the parent company of Muscular Dystrophy News. Survey results indicate that loneliness, regret, and uncertainty play key roles in driving mental health…

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The Killian family of Rockwall, Texas, is celebrating another successful year of Sam’s Night, their annual fundraiser benefiting Parent Project Muscular Dystrophy (PPMD), the leading U.S. nonprofit driving Duchenne and Becker muscular dystrophy care, research, and advocacy efforts. On Thursday, October 15, the Killian family welcomed friends, family, and supporters to Victory Social for the…

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Scientists have uncovered a hidden biological mechanism that helps explain how exercise can reverse some of the damage caused by muscle aging. The key is a gene called DEAF1, which becomes overactive with age and interferes with the muscles’ ability to clear damaged proteins and repair themselves. Exercise can help restore this balance, allowing older…

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MDA’s mission to empower people living with neuromuscular disease to live longer, more independent lives is pursued through a variety of influential and meaningful endeavors. From accelerating research and advancing care to advocating support and providing opportunities for members of our community to connect, grow, and shine – there are a multitude of different ways…

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Tuesdays are my writing days. My column publishes on Fridays, and the draft is due early Wednesday morning, so I write on Tuesdays. I should be a column or two ahead, but I’m a busy mom, and it never works out. My husband of 25 years, Jason, and I share seven children: Lexi, 25; Max,…

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Lily Sander will never forget what it was like to meet other people with neuromuscular diseases the first time she attended Muscular Dystrophy Association (MDA) Summer Camp. Living with Charcot-Marie-Tooth disease, Sander had met only one or two other people with neuromuscular diseases in her city. She was used to explaining why she used a…

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For families living with Duchenne and Becker, planning for adulthood should bring possibilities: education, relationships, work, greater independence, and the opportunity to build a life shaped by individual goals and choices. Too often, it also brings a difficult question about who will provide care when moving from pediatric to adult settings.  At PPMD, we believe…

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