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Blog Post | Personal Stories

MDA National Ambassador Justin Moy Reflects on Our 2019 Clinical & Scientific Conference

If I could describe the 2019 MDA Clinical & Scientific Conference in Orlando, Fla., with one word, it would be “massive” — but fortunately, I have an entire blog post…

Tags: Ambassadors, Innovation, MDA Clinical and Scientific Conference, Technology, Young Adults


Blog Post | Personal Stories

National Ambassador Tana Zwart’s Take on MDA’s 2019 Clinical & Scientific Conference

Tana Zwart When getting acquainted with something new, you can toe-test or you can jump. As for my newly appointed MDA National Ambassador role, attending the inaugural MDA Clinical &…

Tags: Ambassadors, Innovation, MDA Clinical and Scientific Conference, Research, Young Adults


Blog Post | News, Science + Research

Progress in Motion: MDA’s 2019 Clinical & Scientific Conference Heralds New Directions for Neuromuscular Disease Treatment

In April, MDA held its first ever combined Clinical & Scientific Conference, themed “Progress in Motion,” in Orlando Fla. Clinicians, scientists, policymakers, nonprofit, and industry leaders convened for a dynamic…

Tags: Clinical Trials, Gene Therapy, Healthcare, Innovation, MDA Clinical and Scientific Conference, Newborn Screening, Research, Technology, Transitions


Blog Post | News

Read the New MDA Manifesto

Not long ago, supportive care and mobility aids were all medical science could offer people living with neuromuscular disease. But the treatment and care landscapes have begun to change dramatically.…

Tags: Innovation


Blog Post | News, Science + Research

Biogen Releases Letter to ALS Community

Yesterday, Biogen released a letter to the ALS community regarding its experimental therapy, tofersen (formerly known as BIIB067), an antisense oligonucleotide being studied for the potential treatment of amyotrophic lateral…

Tags: Antisense Oligonucleotide, Clinical Trials, Drug Development, Research, Research Advances


Blog Post | News, Science + Research

Mouse Study Finds Link Between Key Mitochondrial Protein and CMT2A, Making It a Possible Therapeutic Target

In a study conducted in mice, scientists led by an MDA-funded researcher found that increasing the amount of a certain mitochondrial membrane protein, mitofusin-1 (MFN1), lessened symptoms of Charcot-Marie-Tooth disease…

Tags: Gene Therapy, Grants, Research


Blog Post | News, Science + Research

Clinical Trial Alert: PTC Therapeutics Seeks Participants for a Phase 3 DMD Study

Researchers at PTC Therapeutics are looking for participants with Duchenne muscular dystrophy (DMD) to participate in a Phase 3 study. The goal of the study is to characterize the long-term…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Research


Blog Post | Personal Stories

Introducing New MDA National Ambassador Tana Zwart, and Checking in With Ambassadors Faith Fortenberry and Justin Moy

Since the early 1950s, not long after the Muscular Dystrophy Association’s formation, America’s young people living with muscular dystrophy and related neuromuscular diseases have stepped forward to share their stories,…

Tags: Ambassadors, Community, Summer Camp, Young Adults


Blog Post | News, Science + Research

MDA Partners with the Broad Institute on Rare Genomes Project for Limb-Girdle Muscular Dystrophy

The Muscular Dystrophy Association (MDA) is pleased to announce a collaboration with the Broad Institute of MIT and Harvard, which aims to bring genetic diagnoses to more individuals living with…

Tags: Genetic Testing, Grants, Research


Blog Post | News, Science + Research

Muscular Dystrophy Association Bridges Clinical and Academic Neuromuscular Research for the First Time at Annual Meeting

With a laser focus on new horizons in neuromuscular research and care, the Muscular Dystrophy Association (MDA) is combining its clinical and scientific conferences for the first time, establishing a…

Tags: Gene Therapy, MDA Clinical and Scientific Conference, Newborn Screening, Research, Technology