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In this Quest Podcast episode, we chat with geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee.  Both have devoted their time…

After an entire year spent celebrating MDA volunteers for the 2023 Year of the Volunteer, MDA is excited to celebrate and recognize our volunteers this National Volunteer Month 2024. The…

Researchers at NS Pharma are seeking boys with Duchenne muscular dystrophy (DMD) amenable to exon 44 skipping therapy to participate in a phase 2 clinical trial to evaluate the safety, efficacy,…

As the MDA Advocacy Team continues their work to support accessible air travel, we have two exciting efforts to share – one from Congress and one from the U.S. Department…

Researchers at Lexeo Therapeutics, Inc. (Lexeo) are seeking adults with cardiomyopathy associated with Friedreich ataxia (FRDA) to participate in an open label, dose-ascending, multicenter Phase 1/2 clinical trial, called SUNRISE-FA…

Rebecca C. Ball-Schaller, who goes by Becca, is an avid crafter, Christmas fanatic, and cat lover. Her guilty pleasure is watching old horror films. She lives in Pennsylvania with her…

For people living with physical disabilities, household tasks and chores can often present their own slew of challenges and barriers. Limitations in mobility, range of motion, energy, and muscle use…

On March 21, the  U.S. Food and Drug Administration gave final approval to Duvyzat (givinostat), a new treatment for children and adolescents living with Duchenne muscular dystrophy (DMD). In clinical…

Are hospitals and healthcare institutions ready to administer new gene therapies? Experts weigh in at the MDA Clinical & Scientific Conference.

Lacey Woods is an MDA Ambassador living with LGMD2i (R9). She is a wife and mother of six children. She works with her husband in real estate and as a…