Everything You Need to Know About MDA Hill Day 2024

Once again, MDA and its grassroots advocates came together in Washington D.C. and ensured that lawmakers heard their voices during MDA on the Hill. This multi-day event from September 8-10 brought together 95 advocates from 24 states across the country. The powerful, influential three-day event featured advocacy training, networking, meetings with members of Congress and…

Our Affordable Accessible Bathroom Renovation

A writer with Charcot-Marie-Tooth disease (CMT) shares what she learned from her affordable accessible bathroom remodel.

Next-Generation Exon-Skipping Therapies May Change the DMD Landscape

The next generation of exon skipping-therapies for Duchenne muscular dystrophy promises to be more effective at restoring muscle-building dystrophin protein.

Overjoyed About Inclusion’s Accessible Controller is Taking Video Gaming to the Next Level

Anthony DeVergillo is passionate about video games – and inclusion. The 31-year-old from Bedminster, NJ, brought that passion to the creation of Overjoyed About Inclusion, a platform that offers accessible connection to the neuromuscular disease community through video games, music, cooking, and more. As someone living with Duchenne muscular dystrophy (DMD), Anthony’s own experience having…

Remote ALS Research Study Expansion

The MDA MOVR program has paired with Mitsubishi Tanabe Pharma America, Inc. (MTPA) to collaborate on a remote observational research study focusing on amyotrophic lateral sclerosis (ALS). Study Details & Benefits: Purpose: This study aims to see if digital tools, like tablets and smartwatches, can reliably track ALS symptoms at home over 1 year. Compensation:…

MDA Kickstart: A New Hope for Ultra-Rare Neuromuscular Disease Treatments

At the Muscular Dystrophy Association (MDA), we’re always striving to break new ground in the fight against neuromuscular diseases. Today, we’re thrilled to share an exciting new initiative that brings hope to those affected by ultra-rare neuromuscular diseases. Introducing the MDA Kickstart program, a bold new venture designed to accelerate the development of gene therapies…

MDA Ambassador Guest Blog: Increasing Representation of Disabilities in Children’s Literature is My Life’s Goal

Thornton Blease wants to live in a world where horses and dragons roam free, and everyone can reach their fullest potential. He lives with myotonic muscular dystrophy and resides in Stewartsville, New Jersey. Thornton graduated from Sarah Lawrence College and earned an MFA in Writing for Children and Young Adults from The New School. He is…

In Case You Missed It…

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. With so many valuable…

Good Bad Things Virtual Premiere Event

Watch. Donate. Feel.

Movies have always been an escape, and a world of fantasy moviegoers can get lost in. However, movies also have an irrefutable impact on our culture. The music, the clothes, the storylines, and the trends we see on the big screen often translate into shaping how people view the real world around them and what…

My Gene Therapy Journey: The Curran Family

Conner Curran made history when he became the first child to receive gene therapy treatment for Duchenne muscular dystrophy (DMD) in a 2018 Pfizer clinical trial. Clinical trials like the one that Conner participated in would lead to the 2023 FDA approval of Sarepta’s Elevydis, a life changing gene therapy treatment. Elevydis brings hope for…

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 43- Disrupting the Narrative

In this Quest Podcast episode, we chat with the director, executive producer, and leading character of the movie Good Bad Things: Shane Stanger, Steve Way, and Danny Kurtzman respectively. This trio joins us to share their experiences, expertise, advice and hope when it comes to navigating life and Hollywood, and creating a future that is…

Episode 42- Empowering Individuality with Inclusive Style

In this Quest Podcast episode, we chat with the Executive Director of Open Style Lab (OSL), a non-profit organization that is on a mission to make style accessible for everyone, regardless of cognitive and physical abilities. Yasmin Keats has devoted her career to the core functions of research, education, and informing the public about inclusive…

Episode 41- Courage Kindled: A Hero’s Unbreakable Spirit

In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s Disease, He and…