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Blog Post | Independence, Personal Stories, Science + Research

Researcher with CMT Awarded MDA Funding to Discover Rare Variants for Multiple Neuromuscular Diseases

Receiving a diagnosis of a neuromuscular disease is often not easy — there can be denial, anger, grief, and a frustrating sense that maybe life is, in a way, over.…

Tags: Grants, Research


Blog Post | Science + Research

Participants Needed for a Pilot Study of a New Diagnostic Device

Dr. Perry Mansfield at the SENTA Clinic in San Diego, Calif., is looking for healthy individuals and patients with neuromuscular disease who have documented neurologic pharyngeal muscle dysfunction (dysfunction of…

Tags: Clinical Trial Alert, Clinical Trials, Research


Blog Post | Science + Research

Five Questions with Mitochondrial Myopathy Researcher Carlos Moraes

Carlos T. Moraes, PhD, professor of Neurology at the University of Miami’s Miller School of Medicine in Florida, has an ongoing MDA research grant (totaling $300,000 over three years) to…

Tags: Grants, Research


Blog Post | Science + Research

Five Questions with DMD Researcher James Ervasti

James Ervasti, PhD, professor of Biochemistry, Molecular Biology, and Biophysics at the University of Minnesota, Twin Cities, was awarded an MDA research grant totaling $300,000 over three years to study…

Tags: Grants, Research


Blog Post | News, Science + Research

MDA Awards 25 Grants Totaling More Than $6.6 Million for Neuromuscular Disease Research

MDA announced today the awarding of 25 new MDA grants totaling more than $6.6 million toward research focused on a variety of rare neuromuscular diseases (NMDs), including amyotrophic lateral sclerosis (ALS),…

Tags: Grants, Research


Blog Post | Science + Research

Five Questions with SMA Researcher Stephen Meriney

Stephen Meriney, PhD, professor of Neuroscience and Psychiatry at the University of Pittsburgh, was awarded an MDA research grant totaling $302,587 over three years to develop a combinatorial drug approach…

Tags: Antisense Oligonucleotide, Grants, Research


Blog Post | Independence, Personal Stories

“How Muscular Dystrophy Changed my Life”: A Diagnosis that Led to an Incredible Cross-Country Journey

In May 2019, Jon Olson set out from Astoria, Oregon to bike across the US. He’s dedicating his miles to MDA, the research and care it supports, and the community…

Tags: Fundraising, Staying Active


Blog Post | News, Science + Research

Biogen Announces Positive Long-Term Results from Phase 2 Study of Spinraza to Treat SMA in Pre-Symptomatic Infants

Biogen announced positive long-term results from its ongoing phase 2 (NURTURE) clinical trial evaluating Spinraza (nusinersen) for treating spinal muscular atrophy (SMA) at the Cure SMA Annual Conference held June 28 through July 1…

Tags: Antisense Oligonucleotide, Clinical Trials, Drug Approval, Gene Therapy


Blog Post | Independence, Personal Stories

This Back-to-School Season, MDA National Ambassador Justin Moy Looks Ahead to Sophomore Year

School creeps up on you! At first you look at your three-and-a-half months on the calendar and marvel at the expansive possibilities, but here I am three months later and…

Tags: Ambassadors, College, Education, Personal Care Attendants


Blog Post | Independence, Personal Stories

Faith Goes Camping: Our National Ambassador Attends Her First MDA Summer Camp

Reagan Imhoff, 14, is a former MDA National Ambassador (2014-2015) and a current camper at MDA Summer Camp in Wisconsin. Reagan, who lives with spinal muscular atrophy (SMA), thoroughly enjoys…

Tags: Ambassadors, Summer Camp