Mary Chapman, features writer —

The Muscular Dystrophy Association (MDA) is providing neuromuscular disease (NMD) patients and their families with the opportunity to meet experts and other people on similar journeys through its Engage Symposiums, free in-person events that include disease-specific sessions as well as talks focusing on NMDs in general. The association…

The muscular dystrophy (MD) community is poised to mark National Muscular Dystrophy Awareness Month with events throughout September to call attention to MD and related neuromuscular disorders — and to raise critical funds for the more than 300,000 U.S. families thought to be affected. The annual observance was…

With projects spanning gene therapy research, patient advocacy, and air travel safety, seven U.S. organizations will receive $140,000 in overall funding from the Muscular Dystrophy Associations (MDA) Advocacy Collaboration Grant Program. The program, which opened in 2022, seeks to support and enhance key public policy and advocacy initiatives…

Race to End Duchenne, the signature fundraising program from Parent Project Muscular Dystrophy (PPMD), has presented Team Michael James with the 2024 “Racing for Every Future Team” award, while Michael Napoli was this year’s “Make Every Day Count” award recipient. Race to End Duchenne supports PPMD’s mission to cure…

Throughout 2023, Muscular Dystrophy News Today worked diligently to cover new scientific research, treatment developments, and clinical studies for muscular dystrophy (MD). Here are the 10 most-read stories of that year. No. 10 – With EMBARK trial data, Sarepta seeks to expand Elevidys’ approval Elevidys (delandistrogene moxeparvovec-roki) is a…

NS Pharma has opened a program for people with Duchenne muscular dystrophy (DMD), and their caregivers and family members, to share insights that might help others living with this most common form of muscular dystrophy. Called Duchenne Heroes, it relates the experiences of patients and…

Continuing years of support for the Muscular Dystrophy Association (MDA), the Eastern Pennsylvania Harley-Davidson Dealers Association (EHDDA) just raised nearly $658,000 at the 36th Annual MDA Ride for Life. Proceeds from the event, held in October this year, will help further the organization’s mission to empower those with…

After three years of virtual academies, applications are now open for Duchenne Patient Academy 2023, an in-person training event for patient advocates for Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD). The academy, presented by the World Duchenne Organization (WDO) and the Duchenne Data…

Covering topics such as mobility equipment and the role of physical therapy, a new, free, online CureDuchenne course seeks to provide guidance and support to Duchenne muscular dystrophy (DMD) caregivers. Specifically, the virtual CureDuchenne Caregiver Course seeks to help caregivers of those newly diagnosed with DMD —…

Entrada Therapeutics has awarded $25,000 grants to three U.S. nonprofits to aid in their efforts to combat healthcare disparities in the Duchenne muscular dystrophy (DMD) community. The goal of these nonprofits, as inaugural recipients of the biopharmaceutical company’s DREAMS — Diversity, Representation, Equity and Advocacy Matters — grant…