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 walk, which just so happened to be my first ever MDA event. Being new to the community, I wasn’t sure what to expect, who would…

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 and challenges and priorities in managing their child’s care in the United States. The findings of this survey will help to better understand the experiences…

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 sensations, and sometimes impaired fine motor skills. While CMT typically progresses slowly, symptoms may spread over time and lead to secondary complications, such as scoliosis.…

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 will help to better understand the symptoms experienced by people with NDM. The study This observational study consists of a one-time Zoom interview that will…

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 down, settle in, and enjoy a good book. This year, we want to spotlight some of the talented voices resonating within the neuromuscular disease community.…

Building More Than Slides: MDA Engage Events Cultivate Connection

As MDA and the Engage Steering Committee gear up for a full day of learning, connection, and empowerment at the upcoming MDA Engage Symposium in Dallas, Texas, the excitement is about more than just a day of presentations – it’s also about connection. The free educational event, which is open to individuals living with neuromuscular…

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. I was in middle school, nervous, unsure, and still coming to terms with the idea that having a disability meant I’d have to explain my…

MDA Summer Camp Magic

Hear from former campers as they reflect on 70 years of MDA Summer Camp magic.

Progress Now: Research News and Updates Across MDA Diseases

Tracking research updates and breakthroughs that help accelerate treatments and cures across MDA diseases.

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.

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. 

QUEST PODCAST

The Quest podcast, proudly presented by the Muscular Dystrophy Association, is part of the Quest family of content. Hosted by Quest Editor-in-Chief, motivational speaker and writer Mindy Henderson.

Episode 55- Unpacking Disability Pride: Voices from the MDA Community

In this Quest Podcast episode, we chat with MDA Ambassadors, Payton Rule, Fred Graves and former MDA National Ambassador Amy Shinneman. Payton shares a journey of transformation from self-doubt to pride, emphasizing how important community has been in helping her feel seen and valued.  While Fred offers a perspective rooted in resilience and advocacy, discussing…

Episode 54- Service Dogs, Inc. – Paws with a Purpose

In this Quest Podcast episode, we chat with a former attorney who left her law practice to devote her time to building Service Dogs, Inc. Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. Under her guidance, Service Dogs, Inc. has led the industry in combining…

Episode 53- Invisible People: Making the Rare Seen

In this Quest Podcast episode, we chat with a former pharmacist turned singer/songwriter who lives with Generalized Myasthenia Gravis. Dania Quill has devoted her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer through song while sharing stories of resilience and positivity.  While…