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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.…

Researchers at Biogen are seeking pediatric FA patients to participate in a phase 3 clinical trial to better understand Friedreich ataxia (FA) and to evaluate omaveloxolone, an investigational therapy for…

What happens after a drug is approved? Sometimes research continues to make it more effective, convenient, or targeted to a neuromuscular disease.

Bio: Rebecca Hume is a Senior Specialist Writer for Quest Media. She graduated from Slippery Rock University and worked in the Pennsylvania Medicaid Waiver Program for more than 10 years…

Researchers at Shionogi Inc. are conducting a phase 2 clinical trial for adults with late-onset Pompe disease (LOPD) who are receiving standard-of-care enzyme replacement therapy (ERT). The study will evaluate…

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…

In this Quest Podcast episode, we chat with Emmy Award-winning filmmaker and disability advocate Samuel Habib and his father and longtime collaborator Dan Habib, the creative duo behind the extraordinary…

Quest Media is an innovative, adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and…

K.L. Cleeton is an entrepreneur, writer, and advocate living with Spinal Muscular Atrophy in rural Illinois. He writes about disability, identity, and the systems that shape how we live at…