Archives
MDA Ambassador Guest Blog: Someone Like Me
My name is Santana Gums and I have LGMD-2b. I live in Arizona and work as a Legal Assistant. Back in February of this year, I attended the Arizona Muscle…
Clinical Research Alert: Observational Study on Parent and Caregiver Perspectives on Adherence to DMD Care
Researchers at Albany Medical College are seeking parents and caregivers of children with Duchenne muscular dystrophy (DMD) to participate in an observational REDCap survey about their adherence to DMD care guidelines…
Tags: Clinical Trial Alert
Simply Stated: Updates in Charcot-Marie-Tooth Disease (CMT)
Charcot-Marie-Tooth disease (CMT) encompasses a group of inherited disorders that affect movement and sensation in the arms, legs, hands, and feet. Common symptoms include lower leg weakness, foot deformities, reduced…
Tags: Simply Stated
Clinical Research Alert: Natural History Study of Individuals with Non-Dystrophic Myotonias
Researchers at the Center for Health + Technology at the University of Rochester are seeking individuals with non-dystrophic myotonias (NDM) to participate in an observational interview. The findings of the interviews…
Tags: Clinical Trial Alert
National Read a Book Day: Spotlight on Community Authors
While every day is a good day to enjoy the simple pleasure of reading, National Read a Book Day on September 6th offers a fun reminder for booklovers to slow…
Tags: Community
Building More Than Slides: MDA Engage Events Cultivate Connection
Dr. Kaitlin Batley, Engage Steering Committee member, MDA Care Center Director, Assistant Professor at UT Southwestern, and neurologist at Children’s Health. As MDA and the Engage Steering Committee gear up…
Tags: Community, Education, Healthcare, Innovation, MDA Engage, Resources
Life with Lily: The Right to Access My Education Fully
“Lily, I think you’re old enough now to advocate for yourself in your 504 meeting today.” I remember my mom saying that like it was a small thing. It wasn’t.…
Tags: Ambassadors, Community, Education, Life with Lily, Lily, MDA Ambassadors, MDA National Ambassador Blog, Parenting, Year of Independence, Young Adults
MDA Summer Camp Magic
Hear from former campers as they reflect on 70 years of MDA Summer Camp magic.
Tags: 70th anniversary, Featured Content, Summer Camp, children with neuromuscular diseases, volunteering
Progress Now: Research News and Updates Across MDA Diseases
Tracking research updates and breakthroughs that help accelerate treatments and cures across MDA diseases.
Tags: Antisense Oligonucleotide, Clinical Trials, Drug Development, Exon Skipping, Featured Content, Gene Therapy, Research
Neuromuscular Disease Research: Going Strong
MDA was founded on the hope for a better future for people with neuromuscular diseases. 75 years later, we continue to drive progress in neuromuscular disease research.
Tags: Clinical Trials, Featured Content, Gene Therapy, MDA Care Centers, Muscle Regeneration, Neuromuscular Disease Research, Rare Disease Research