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Blog Post | Advocacy

Reporting Back on MDA’s First-Ever Virtual Hill Day

When the COVID-19 pandemic made meeting in person impossible, MDA’s Advocacy program needed to shift from in-person to virtual meetings with lawmakers. In early August, volunteers met with their lawmakers…

Tags: Advocacy Updates, Ambassadors, MDA Care Centers, Summer Camp


Blog Post | Health, Independence

Who’s On Your MDA Care Center Team?: Young-Adult- and Adult-Focused Social Workers

At more than 150 MDA Care Centers nationwide, kids and adults living with neuromuscular disease (NMD) have access to multidisciplinary care teams made up of different specialists who can coordinate…

Tags: Healthcare, MDA Care Centers, Mental Health, Resources, Staying Active


Blog Post | Science + Research

FDA Accepts Sarepta Therapeutics’ New Drug Application for DMD Treatment Casimersen

On Aug. 25, Sarepta Therapeutics announced that the US Food and Drug Administration (FDA) accepted the company’s New Drug Application (NDA) seeking accelerated approval for casimersen (SRP-4045), an investigational therapy…

Tags: Drug Development, Exon Skipping, Innovation, Research, Research Advances


Blog Post | Health, Inclusion, Independence

Who’s On Your MDA Care Center Team?: Pediatric Social Workers

At more than 150 MDA Care Centers nationwide, kids and adults living with neuromuscular disease (NMD) have access to multidisciplinary care teams made up of different specialists who can coordinate…

Tags: Education, Healthcare, Insurance, MDA Care Centers, Mental Health, Resources, Staying Active


Featured Article | Advocacy, Inclusion, Personal Stories

Smashing Stereotypes

Jessica Hetzel faced a long but rewarding journey to join Greek life on her college campus. Making sorority life more inclusive, one chapter at a time

Tags: College, Education, From Where I Sit, Relationships, Young Adults


Featured Article | Advocacy

MDA’s 2020 Advocacy Agenda Update

Even during the COVID-19 pandemic, MDA continues to make sure lawmakers hear the voice of the neuromuscular disease community

Tags: Advocacy Updates, COVID-19, Clinical Trials, Newborn Screening


Featured Article | Science + Research

The Expanding Therapeutic Landscape for Myasthenia Gravis

A Q&A with Gil I. Wolfe, MD

Tags: Drug Development, Research, Research Advances, Spotlight


Featured Article | Health, Science + Research

Expanding Access to Genetic Testing

MDA Care Centers bring no-cost genetic testing to people suspected of having a muscular dystrophy

Tags: Clinical Trials, Genetic Testing, Healthcare, MDA Care Centers


Featured Article | Advocacy, Inclusion, Independence

Change for the Better

Advocacy for — and within — the neuromuscular disease community

Tags: Accessible Air Travel, Advocacy Updates, COVID-19, Summer Camp


Blog Post | News, Research

FDA Approves NS Pharma’s Viltepso for Treatment of DMD Amenable to Exon 53 Skipping

Today, the US Food and Drug Administration (FDA) granted accelerated approval to viltolarsen (Viltepso) for the treatment of Duchenne muscular dystrophy (DMD) in patients amenable to skipping exon 53. It is…

Tags: Clinical Trials, Drug Approval, Exon Skipping