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Too many people living with a neuromuscular disease (NMD) have difficulty obtaining an accurate diagnosis. This “diagnostic odyssey” can take years or decades to resolve and leads to frustration and…

For those living with a physical disability, it is not uncommon to encounter barriers or challenges in the pursuit for independence, education, and employment. Accessing appropriate and effective programs and…

Spinal-bulbar muscular atrophy (SBMA) is a genetic disorder in which degeneration of lower motor neurons, the nerve cells that connect the spinal cord and brainstem to the muscles, causes slow,…

The FDA’s approval of Elevidys, the first gene therapy for Duchenne muscular dystrophy (DMD) brings hopes and concerns for families in the MDA community.

While many volunteers undoubtedly recognize the multitude of valuable benefits gained by volunteering, they often minimize the incredible value that they bring. MDA’s Senior Director of Volunteer Programs, Wendi Dressen,…

As the world emerges from the clutches of the pandemic, a positive change is underway here at the MDA: our re-integration into Care Centers. Throughout the challenging times of the…

On July 20, 2023, by a vote of 351-69, the US House passed legislation to reauthorize the Federal Aviation Act (FAA), which includes the most transformative air travel accessibility reforms…

MDA Ambassador Grace LoPiccolo MDA Ambassador Grace LoPiccolo, 20, of St. Louis, Missouri was diagnosed with CMT-1A at the age of nine. She currently attends Saint Louis University majoring in…

Through the many chapters and changing seasons of parenthood, preparing an adult child to venture out into the world on his or her own is perhaps one of the most…

In this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost…