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Blog Post | Finding a Diagnosis, Science + Research

Simply Stated: Research Updates in Facioscapulohumeral Muscular Dystrophy (FSHD)

Facioscapulohumeral muscular dystrophy (FSHD) is a rare genetic disorder that affects the muscles of the face (facio), shoulders (scapulo), and upper arms (humeral). It is one of the most common…

Tags: Healthcare, Research, Simply Stated


Blog Post | Science + Research

What About My Disease? Why a New Treatment for One Neuromuscular Disease Is Good News for All

New therapies and research advances for some neuromuscular diseases are paving the way for developing new treatments for other rare diseases.

Tags: Antisense Oligonucleotide, Clinical Trials, Drug Development, Featured Content, Gene Therapy, Innovation, Research


Blog Post | Finding a Diagnosis, Lifestyle, Personal Stories

MDA National Ambassador Blog-Letters From Leah: What I’d Like Parents to Know About Being a Teenager with a Disability

Leah is an MDA National Ambassador who lives with a rare form of neuromuscular disease. Dear Parents, Hi,  my name is Leah and I am 15 years old. I live…

Tags: Ambassadors, Community, Leah, Letters From Leah, Parenting, Young Adults


Blog Post | Inclusion, Lifestyle, Personal Stories

Quest Podcast: Catching Up with Bill Crossland

For our February Valentine’s Day Quest Podcast, we catch up with Bill Crossland, a writer, director, producer, and actor who lives with muscular dystrophy. Bill shares his insights and experiences…

Tags: Quest Podcast


Blog Post | Get Involved, Personal Stories

How MDA Prepares and Supports Summer Camp Volunteers

MDA Summer Camp is a magical place where truly anything is possible. Every summer, youth living with neuromuscular diseases have the opportunity to attend week-long sessions of overnight camp filled…

Tags: Summer Camp, Volunteers, Year of the Volunteer


Blog Post | Inclusion

MDA Expands Community Access to Resources with Language Translation Service

MDA’s mission is to empower the people we serve to live longer, more independent lives. One way that we do this is through support-centered check-in calls and touchpoints. In line…

Tags: Community, MDA Resource Center


Featured Article | Advocacy, Independence

The Good and Bad of Using Public Transit With a Disability

Public transportation can mean independence for people with disabilities if you know how to use it — and how to advocate for accessibility.

Tags: Resources, Thrive 365


Featured Article | Finding a Diagnosis, Science + Research

Q&A: Understanding Congenital Muscular Dystrophy

Congenital muscular dystrophy (CMD) expert Dean Burkin, PhD, answers questions about diagnosis, treatments, and the latest research.

Tags: Antisense Oligonucleotide, Clinical Trials, Drug Development, Exon Skipping, Gene Therapy, Research, Research Advances, Spotlight


Featured Article | Lifestyle, Personal Stories

Muscular Dystrophy and Dating

These tips from community members and a mental health expert can help you navigate dating and sex with a neuromuscular disease.

Tags: Featured Content, Relationships, Young Adults


Featured Article | Inclusion, Lifestyle

MDA’s Art Collection Celebrates the Talents of Our Community

The MDA Art Collection showcases the talents of artists, young and old, living with muscular dystrophy and other neuromuscular diseases.

Tags: Community