Archives

The ACA, or Obamacare, improves access to affordable health insurance for people with preexisting conditions like neuromuscular diseases.

For the neuromuscular disease community, the ADA provides protections for people with disabilities to work and participate fully in their communities.

Current clinical trials enrolling, recent study results, new drug approvals, and more across MDA diseases.

A birder with muscular dystrophy shares his story, adaptive equipment journey, and how birdwatching can improve your health and well-being.

In this episode of the Quest Podcast, we chat with Nicole Lucas, a devoted family caregiver and dental hygienist who stepped away from her career so that her daughter could…

Since her diagnosis with ALS at age 32, Gwen Petersen has poured her energy into advancing the science of her disease through participation in clinical and observational research. Gwen works…

Carlee Weber and Nicole Lucas This month, the Muscular Dystrophy Association (MDA) is launching an important advocacy campaign urging Congress to advance policies that improve the lives of family caregivers…

Julianne Meiser, MSS, LCSW, an Outpatient Social Worker in the Division of Neurology at the Children’s Hospital of Philadelphia. By nature, medical emergencies are unexpected, stressful, and often traumatic experiences.…

In the movie “Extraordinary Measures,” Dr. Stonehill invented a treatment for Pompe disease. This is the true story of how John Crowley helped save his children’s lives.

Kathryn Arvidson champions accessible mental health treatment for people with disabilities.  Kathryn was diagnosed as a child with a rare degenerative neuromuscular disorder, Pompe disease, that impacts her mobility and…