Archives
Sponsors Share in MDA Summer Camp Magic
For many youths living with neuromuscular disease, MDA Summer Camp is the highlight of the summer. The free, week-long, sleep-away camp provides a place for campers to participate in accessible…
Tags: Community, Fundraising, Summer Camp
MDA Ambassador Guest Blog: Finding Hope and Optimism in New Treatments
Chase Rankin was diagnosed with Friedreich’s ataxia in 7th grade. He is now majoring in Communication Studies at the University of North Carolina at Charlotte. Chase Rankin I’ll be completely…
Tags: Ambassador Guest Blog, Ambassadors, Clinical Trials, Drug Approval, Drug Development, Healthcare, Innovation, Research Advances, Young Adults
FAA Reauthorization is Law: Major Victory for Accessible Air Travel!
MDA Advocacy has some exciting and impactful news to share out of Washington, DC! The recent passage of the FAA Reauthorization Act marks a significant milestone in making air travel…
A Family Legacy of Philanthropy Shapes Price Chopper/Market 32’s Commitment to Community
Price Chopper/Market 32’s commitment to serving and supporting the neuromuscular disease community is undeniable. Through a variety of fundraising campaigns over the last 39 years, they have raised more than…
Tags: Community, Fundraising, MDA Care Centers
Simply Stated: Updates in Endocrine Myopathies
Endocrine myopathies are muscle disorders caused by abnormal activity of the endocrine (hormone-producing) glands, which include the thyroid, adrenal, parathyroid, pituitary, and gonadal glands. Too much or too little hormone…
Former Collegiate Athlete Shares How to Stay Positive When Plans Change
To say that life does not always go as planned is an understatement. Unexpected changes during life’s journey often require individuals to make difficult decisions, sacrifices, and adjustments. And due…
Tags: College, Community, Mental Health, Staying Active, Transitions
Clinical Study Alert: Open-Label, Observational Study of Risdiplam in Adults with SMA
Researchers at Ohio State University are seeking adults with spinal muscular atrophy (SMA) who have been treated with the FDA-approved therapy risdiplam (brand name Evrysdi®) to participate in an open-label clinical…
Tags: Clinical Trial Alert
Treatment Options for Autoimmune Neuromuscular Diseases
Scientists are still trying to find out what causes autoimmune neuromuscular diseases, but breakthroughs are leading to more treatment options than ever.
The Value of Community and Connection through Sports and NMD
Darci Garcia is 44 years old. She is originally from Iowa and has been living in suburban Houston, Texas for the last 17 years. Darci is a wife, mother, retired…
Tags: Ambassador Guest Blog, Ambassadors
Clinical Trial Alert: Phase 3 Study of ALXN1720 in Adults with Generalized Myasthenia Gravis (gMG)
Researchers at Alexion AZ Rare Disease are seeking adults living with generalized myasthenia gravis (gMG) to participate in a phase 3 clinical trial (PREVAIL Study) to evaluate the safety and efficacy…
Tags: Clinical Trial Alert