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Talking About Your Child’s Diagnosis Helps Build Your Support System
When Stephanie and Wayne Donato received the diagnosis of Duchenne muscular dystrophy (DMD) for their son Maximus, who was 4 at the time, in 2017, “we were completely blindsided,” Stephanie…
Tags: Parenting, Relationships, Resources
Tips for Setting Up an Accessible Home Office
When the COVID-19 pandemic emerged in March 2020, Matthew Lawson’s employer — like many others around the country — temporarily closed its doors and had team members go remote to…
Tags: Employment
MDA Helps Students and Teachers Achieve Success Together
It can be overwhelming for educators to learn the various challenges associated with neuromuscular diseases and to take those considerations into the classroom. The good news is that these students…
Why You’re Not Addressing Vaccine Concerns (And What You Can Do About It)
Vaccines have been protecting Americans from dangerous contagious diseases for decades and people who live with neuromuscular disease are more likely to develop severe illness from a COVID-19 exposure. Learn…
Tags: COVID-19, Featured Content, Healthcare
Research Study Alert: Observational Study of Clinical and Electrophysiological Outcomes in Adults with CMT
Researchers at Ohio State University are seeking adults living with Charcot-Marie-Tooth disease type 1 (CMT-1) and type 2 (CMT-2) to participate in a one-month observational study (CMT Establish). This study is…
Clinical Trial Alert: Phase 3b Study of Oral Edaravone in Adults with ALS
Researchers at Mitsubishi Tanabe Pharma Development America, Inc. (MTPA) are seeking adults living with amyotrophic lateral sclerosis (ALS) to participate in a phase 3b clinical trial to evaluate the safety and…
Capricor Announces Positive Results from its Phase 2 Study of CAP-1002 to Treat DMD
On September 24, Capricor Therapeutics announced positive results at the World Muscle Society Virtual Congress from its phase 2 HOPE-2 trial of the investigational therapy CAP-1002 for treatment of people…
Improving Air Travel for People Living with a Disability
Broken wheelchairs. Inaccessible seating. Hard to navigate aircraft. For too many in the neuromuscular community, traveling by air is not accessible. We sat down with Paul Melmeyer, MDA’s VP of…
Clinical Trial Alert: Phase 3 Study of High Dose Eteplirsen in Boys with DMD
Researchers at Rare Disease Research, LLC are seeking boys between the ages of 7-years-old and 13-years-old who are living with Duchenne muscular dystrophy (DMD) to participate in the phase 3 MIS51ON…
Clinical Trial Alert: Phase 2 Study of Ataluren in Children with Nonsense Mutation DMD
Researchers at Rare Disease Research, LLC are seeking boys between the ages of 6 months and 2 years who are living with Duchenne muscular dystrophy caused by a nonsense mutation (nmDMD)…