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In order to prepare for drug development in the neuromuscular disease (NMD) field, some researchers are focusing on natural history studies to better understand these rare diseases. Natural history studies…

Emery-Dreifuss muscular dystrophy (EDMD) is a rare genetic disorder that affects muscle and joint function, and is often associated with cardiac (heart) complications. The exact prevalence of EDMD is unknown,…

Christy Hickman (left) and Peyton (right) have experienced many of the common challenge of finding accessible dental care. From small exam rooms to uncomfortable dental chairs, many dentists’ offices are…

Researchers at Regeneron are seeking adults who have symptomatic, generalized myasthenia gravis (gMG), presenting with anti-AChR antibodies or anti-LRP4 antibodies, to participate in a phase 3 clinical trial (NIMBLE) to evaluate…

The CDC estimates that 40.3 million individuals in America experienced Substance Use Disorder (SUD) in the year 2020. SUD, also commonly referred to as substance abuse or addiction, is a…

On April 25, the US Food and Drug Administration (FDA) granted accelerated marketing approval of Qalsody (tofersen) for the treatment of amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s…

From broken bones to broken wheelchairs, we know traveling by air can be a nightmare for people living with a disability. However, MDA and its grassroots advocates have a unique…

Megan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. Megan lives with SMA and is the organizational founder of No Such Thing, a company with a mission…

MDA Family and Clinical Support Specialist, Jordann Hager There are exciting transitions happening at the Muscular Dystrophy Association! As we move to being in-person at MDA Care Centers again, there…

At the MDA Clinical & Scientific Conference, researchers discussed how therapy advances make newborn screening for Pompe disease even more important.