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Featured Article | Advocacy, Personal Stories

All in the Family

The Zelaya family (clockwise from left): Bevsi (amazing mom), Jaime (advocate dad), Josiah (kind big brother), Nehemiah (curious younger brother), and Leah (compassionate middle sister) Why we advocate for families…

Tags: From Where I Sit, Genetic Testing, Leah, MDA Care Centers


Featured Article | Independence, Lifestyle

7 Ways to Make Life at Home Easier

How to master your tasks and practice self-care

Tags: Featured Content, Innovation, MDA Care Centers, Staying Active


Blog Post | Health, Independence

A Letter From Dr. Susan Apkon to the MDA Community: How Telehealth is Changing Medicine (and How to Prepare for It)

MDA Care Center physicians across the country are working on the frontlines of the novel coronavirus pandemic. Every day, they’re fielding patient questions and finding new ways to practice medicine…

Tags: COVID-19, Healthcare, Insurance, MDA Care Centers, Technology


Blog Post | Advocacy

Clinical Trials During COVID-19: What We Need From the FDA

Over the course of the last several months, the US Food and Drug Administration (FDA) has undertaken many actions aimed at slowing the spread of the novel coronavirus and ensuring…

Tags: COVID-19, Clinical Trials


Blog Post | Get Involved

This National Volunteer Week, Your Virtual Support of MDA Means Even More

Volunteers are a rich part of MDA’s 70-year history. Through volunteer committees, boards, community events, and Summer Camps where kids build confidence and independence, they are tightly woven into MDA’s…

Tags: Fundraising, Let's Play, Summer Camp, Volunteers


Blog Post | Advocacy

MDA Advocacy in These Uncertain Times

We know families across the country, especially those in the neuromuscular disease (NMD) community, are concerned about the spread of coronavirus and its associated disease, COVID-19, and the impact on…

Tags: Accessible Air Travel, Advocacy Updates, COVID-19, Drug Development, Employment, Healthcare, Insurance


Blog Post | News, Science + Research

Acceleron Pharma Announces Discontinuation of Clinical Trials Program for CMT

On March 9,Β Acceleron Pharma, Inc., announced that a phase 2 clinical trial of its therapy under development, ACE-083, for the treatment of Charcot-Marie-Tooth disease (CMT) did not show statistically significant…

Tags: Clinical Trials


Blog Post | News, Science + Research

NS Pharma Launches Expanded Access Program for Viltolarsen

On March 9, NS Pharma Inc. (a wholly owned US subsidiary of Nippon Shinyaku Co. Ltd.) announced that it has launched an Expanded Access Program in the United States for…

Tags: Clinical Trials, Drug Development, Exon Skipping, Research


Blog Post | Get Involved

What’s New for MDA Muscle Walk in 2020

Since 2011, MDA Muscle Walks have been gathering individuals living with muscular dystrophy, ALS, and related neuromuscular diseases with their families, friends, and communities across America. Together, they’ve raised awareness…

Tags: Fundraising, Muscle Walk


Blog Post | Health, Science + Research

Simply Stated: What is Inclusion-Body Myositis?

Myopathy is a disease condition where muscle fibers do not function properly, resulting in muscular weakness. Inclusion-body myositis (IBM) is a type of inflammatory myopathy that is characterized by inflammation,…

Tags: Research, Simply Stated