Archives
Simply Stated: Updates in Walker-Warburg Syndrome
Walker-Warburg syndrome (WWS) is a rare, inherited disorder that significantly affects the muscles, brain, and eyes. It is a form of congenital muscular dystrophy (CMD), a group of genetic muscle…
Tags: Simply Stated
Respiratory Support Makes a Big Difference: Community Perspectives on Using a Ventilator
Community members who use breathing devices say their ventilators support their freedom, mobility, and energy and improve respiratory health.
MDA’s Guide to the Rehabilitation Act of 1973
More than 50 years ago, the Rehabilitation Act first outlawed disability discrimination and established a foundation for disability rights.
Tags: Disability Legislation, Education, Employment, Featured Content, MDA Resource Center, Resources, Technology
MDA’s Guide to the Affordable Care Act (ACA)
The ACA, or Obamacare, improves access to affordable health insurance for people with preexisting conditions like neuromuscular diseases.
Tags: Disability Legislation, Featured Content, Healthcare, Insurance, MDA Resource Center, Resources
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