Archives
MDA’s Guide to the Americans with Disabilities Act (ADA)
For the neuromuscular disease community, the ADA provides protections for people with disabilities to work and participate fully in their communities.
Progress Now: Drug Approvals and Clinical Trial Updates
Current clinical trials enrolling, recent study results, new drug approvals, and more across MDA diseases.
Accessible Birding: An Inclusive Window to Nature and Wildlife
A birder with muscular dystrophy shares his story, adaptive equipment journey, and how birdwatching can improve your health and well-being.
Quest Podcast: The People Behind the People: Family Caregiving, Policy, and the Power of Showing Up
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…
Tags: Caregiving, Parenting, Relationships
MDA Ambassador Guest Blog: How to Find Community for Young People Living with Debilitating Diseases
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…
The Why Behind MDA’s Campaign to Support Family Caregivers
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…
Tags: Caregiving, Community, Relationships
Expert Advice for Preparing for Medical Emergencies with NMD
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.…
Tags: Caregiving, Community, Healthcare, Parenting, Resources
Pompe Disease and the Real Story Behind Dr. Stonehill, John Crowley, and ‘Extraordinary Measures’
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.
MDA Ambassador Guest Blog: My Pompe Journey
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…
Quest Podcast: From Roadmap to Emmy: Samuel and Dan Habib on Filmmaking, Family, and Disability
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…
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