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Quest Podcast: Voices of Inclusion: Celebrating NDEAM with Disability:IN
October is National Disability Employment Month (NDEAM). In this month’s episode of the Quest podcast, we dive into accessibility and inclusion in the workforce with Russell Shaffer, Executive Vice President of Strategy & Programs at Disability:IN. Drawing on his lived experience of vision loss and his years of working in corporate diversity, equity, and inclusion,…
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2026 MDA conference to focus on ‘innovation driving us forward’
The Muscular Dystrophy Association (MDA) has announced the agenda for its 2026 MDA Clinical & Scientific Conference — slated for March 8-11 in Orlando, Florida — and the focus, the nonprofit says, is on “groundbreaking research and clinical achievements.” The annual event, held in a different locale each year, brings together scientists, clinicians, affiliated healthcare providers,…
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Cooking with a Disability? Yes, Chef!
Growing up as a full-time wheelchair user living with myofibrillar myopathy (MFM), 21-year-old Gabby DiSalvo always considered the kitchen an inaccessible place. But when the COVID-19 pandemic started while she was in high school, and she was stuck at home, Gabby tried cooking to pass the time. Creating recipes and learning how to cook soon…
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I ‘muscle through’ LGMD challenges with a little bit of humor
I’ve always had a robust sense of humor. Some people have told me that I’m witty and quick to respond to a funny situation while also defusing tense conversations with laughter. I think it’s a piece of my armor that protects me from my rare chronic illness, limb-girdle muscular dystrophy. (That’s type 2E/R4 for those…
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20th Annual Sam’s Night Event Marks Two Decades of Community Impact, Growth, and Hope for Families Living with Duchenne
The Killian family, of Rockwall, TX, are celebrating a record-breaking fundraising milestone with their annual Sam’s Night event to benefit PPMD. On Thursday, October 16, 2025, the Killian family celebrated 20 years of Sam’s Night—an unforgettable evening at Victory Social that matched last year’s record $1.5 million for the fight to end Duchenne. Since its…
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Newly Published Study Evaluates Patients’ and Caregivers’ Acceptable Risk from Gene Therapy
A new threshold study, “Re-evaluating Acceptable Risk of Death from Gene Therapy,” has been published in the European Journal of Medical Genetics. This work addresses a critical question: how should risk and benefit be assessed and balanced in potentially life-changing gene therapies for conditions like Duchenne muscular dystrophy? In developing and considering therapeutic options, individuals…
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Duchenne MD therapy brogidirsen shows long-term benefit in boys
Brogidirsen (NS-089/NCNP-02), NS Pharma’s investigational therapy for people with Duchenne muscular dystrophy (DMD) who are amenable to exon 44 skipping, has been shown to sustain motor function and maintain a favorable safety profile over 3.5 years of treatment in an open-label extension study. The therapy is designed to restore the production of a functional version…
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MDA Ambassador Guest Blog: Why I am Speaking Up for Our Community at MDA Hill Day
Faith is 14 years old and lives in Texas. She is a freshman in high school. Faith served as the MDA National Ambassador in 2018 and 2019. She is currently serving as her Freshman Class President. Faith loves the time she has spent at MDA Summer Camp, and in her spare time she loves to…
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Appreciating kind gestures as my health needs increase
In the past couple months, I’ve had more medical challenges than usual. My right arm hasn’t been working well, leading to some additional struggles with activities of daily living. In June, what I thought was a bug bite appeared on the knuckle of my right middle finger. It would swell up then burst open every…
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This type of meat supercharges muscle growth after workouts
Scientists discovered that lean pork builds muscle more effectively post-workout than high-fat pork, even with identical protein levels. Using advanced tracking techniques, they found that fat content blunted the body’s muscle-building response. The results contradict previous findings about fattier foods enhancing synthesis, suggesting that food form and processing matter.
