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Featured Article | Independence, Lifestyle, Personal Stories

Jonathan Piacentino: How I’m Navigating Life After College

Jonathan Piacentino was diagnosed with DMD in 1998. Learn how he’s navigating life after college.

Tags: Ambassadors, College, Education, Featured Content, From Where I Sit, Young Adults


Featured Article | Health, Independence

Smart Steps to Take in a Medical Emergency

When you live with rare a neuromuscular disease, you should know what steps to take in a medical emergency with first responders and in the hospital.

Tags: Featured Content, Healthcare


Blog Post | Advocacy, Get Involved, Health, Science + Research

MDA’s Legislative Efforts to Increase Access to Genetic Medicine

Too many people living with a neuromuscular disease (NMD) have difficulty obtaining an accurate diagnosis. This “diagnostic odyssey” can take years or decades to resolve and leads to frustration and…

Tags: Advocacy Updates, Gene Therapy, Genetic Testing, Healthcare


Blog Post | Inclusion, Independence

Three Community Resources You Need to Know

For those living with a physical disability, it is not uncommon to encounter barriers or challenges in the pursuit for independence, education, and employment. Accessing appropriate and effective programs and…

Tags: Community, Education, Employment, MDA Resource Center, Resources


Blog Post | Finding a Diagnosis, Health, Science + Research

Simply Stated: Research Updates in Spinal-Bulbar Muscular Atrophy (SBMA)

Spinal-bulbar muscular atrophy (SBMA) is a genetic disorder in which degeneration of lower motor neurons, the nerve cells that connect the spinal cord and brainstem to the muscles, causes slow,…

Tags: Clinical Trials, Fundraising, Grants, Healthcare, Innovation, Research, Research Advances, Simply Stated


Blog Post | Science + Research

DMD Gene Therapy Approval Ignites Hope

The FDA’s approval of Elevidys, the first gene therapy for Duchenne muscular dystrophy (DMD) brings hopes and concerns for families in the MDA community.

Tags: Drug Approval, Exon Skipping, Featured Content, Gene Therapy, Research


Blog Post | Get Involved, Independence

Not JUST a Volunteer: The Powerful Impact of MDA Volunteers

While many volunteers undoubtedly recognize the multitude of valuable benefits gained by volunteering, they often minimize the incredible value that they bring. MDA’s Senior Director of Volunteer Programs, Wendi Dressen,…

Tags: Community, Fundraising, Research, Volunteers, Year of the Volunteer


Blog Post | Health

MDA’s Re-integration Back into Care Centers: Three Support Specialists’ Perspectives

As the world emerges from the clutches of the pandemic, a positive change is underway here at the MDA: our re-integration into Care Centers. Throughout the challenging times of the…

Tags: Community, Healthcare, MDA Care Centers


Blog Post | News

Air Travel Update: US House Passes FAA Reauthorization

On July 20, 2023, by a vote of 351-69, the US House passed legislation to reauthorize the Federal Aviation Act (FAA), which includes the most transformative air travel accessibility reforms…

Tags: Accessible Air Travel, Advocacy Updates, Community, Travel


Blog Post | Get Involved, Inclusion, Independence, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: Navigating Disability Advocacy on My College Campus

MDA Ambassador Grace LoPiccolo MDA Ambassador Grace LoPiccolo, 20, of St. Louis, Missouri was diagnosed with CMT-1A at the age of nine. She currently attends Saint Louis University majoring in…

Tags: Ambassador Guest Blog, Ambassadors, College, Community, Mental Health, Relationships, Resources, Young Adults