Archives
Inclusion and Accessibility for All: Understanding Your Rights as a Shopper
For those living with physical disabilities, accessibility is a cornerstone of inclusion. While a focus on inclusivity and diversity has become more prevalent in the last ten years, with many…
Tags: Community
Simply Stated: Research Updates in Pompe Disease
Pompe disease (also called acid maltase deficiency) is a rare, metabolic muscle disorder that causes slow, progressive muscle weakness, especially of the respiratory (breathing) muscles and those of the hips,…
MDA Peer Connections Program Creates Lasting Friendships
The MDA Peer Connections Program provides an opportunity for members of the neuromuscular disease community to build bonds with one another, both across the country and in their own neighborhoods.…
2023 MDA Clinical and Scientific Conference Starts Strong
The first day of the 2023 MDA Clinical & Scientific Conference covered FDA approval, gene therapy, ultra-rare diseases, and more.
Tags: Clinical Trials, Drug Development, Featured Content, Gene Therapy, Innovation, MDA Clinical and Scientific Conference, Research
MDA Ambassador Guest Blog: The Magic of MDA Summer Camp
MDA Ambassador Leticia Tatum MDA Ambassador Leticia Tatum, 42, of Birmingham, Alabama was diagnosed with SMA at the age of two. She currently serves as the Vice President of Human…
Quest Podcast: The Changing Landscape of Neuromuscular Care
As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromuscular disease, understanding your options and accessing…
Tags: Drug Development, Gene Therapy, Genetic Testing, Healthcare, Innovation, MDA Care Centers, My Gene Therapy Journey, Quest Podcast, Research, Research Advances
How Small Endeavors Make a Big Impact
MDA’s mission to fund groundbreaking research for neuromuscular disease treatment and provide families with the highest quality care would not be possible without the generous donation of time and resources…
Tags: Community, Fill the Boot, Muscle Walk, Shamrocks, Summer Camp, Volunteers, Year of the Volunteer
Make Sure You Don’t Lose Your Medicaid Coverage
Many Americans, including those living with a neuromuscular disease, rely on Medicaid to access vital medical care, especially during the COVID-19 pandemic. However, as the federal Public Health Emergency (PHE),…
Clinical Trial Alert: Phase 2 Study of ALXN2050 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 2 clinical trial (ExpanD Study) to evaluate the safety and efficacy…
For Ukrainians with Rare Diseases, Life is Still a Struggle
February 28 marked Rare Disease Day — an annual event calling attention to the 300 million people worldwide who live with one or more of the 7,000 illnesses classified as…
Tags: Community, Healthcare