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Blog Post | Advocacy, Inclusion

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


Blog Post | Finding a Diagnosis, Science + Research

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,…

Tags: Clinical Trials, Drug Development, Gene Therapy, Simply Stated


Blog Post | Finding a Diagnosis, Get Involved, Lifestyle

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.…

Tags: Community, MDA Peer Connections, Relationships


Blog Post | Science + Research

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


Blog Post | Lifestyle, Personal Stories

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…

Tags: Ambassador Guest Blog, Ambassadors, Summer Camp


Blog Post | Health, Science + Research

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


Blog Post | Get Involved

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


Blog Post | News

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),…

Tags: Advocacy Updates, Emergency Resources, Healthcare, Insurance


Blog Post | Science + Research

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…

Tags: Clinical Trial Alert, Clinical Trials


Blog Post | News, Uncategorized

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