Research Study Alert: Observational Study of Cardiovascular Function in Children with BMD or DMD

Researchers at University of Delaware are seeking children living with Becker muscular dystrophy (BMD) or Duchenne muscular dystrophy (DMD) to participate in a study designed to determine the effects of BMD and DMD on the function of blood vessels in the arms, legs, and neck as well as the heart itself. The goal of this study…

Research Study Alert: At-Home Research Study of Blood Biomarkers in People with SMA or SMA Mutations

Sanguine Biosciences, a provider of at-home clinical research services, is seeking people living with spinal muscular atrophy (SMA) and people who carry SMA-causing mutations to participate in a preclinical study. The goal of this research is to enhance the understanding of SMA to support development of new diagnostic and treatment options for people living with…

New Therapy Brings Hope for Late-Onset Pompe Disease

“Don’t hope for a miracle. Make one,” is the powerful tag line from Extraordinary Measures a 2010 drama film starring Brendan Fraser, Harrison Ford, and Keri Russell. The movie is inspired by the true story of John and Aileen Crowley, a couple whose lives take a turn when their two youngest children are diagnosed with…

Episode 33- Wheelchair Barbie Talks Advocacy and Inclusion

In this Quest Podcast episode, we chat with a renowned journalist, model and disability rights activist, who lives with physical disabilities. Madison Lawson, who has been featured in publications including Vogue, Glamour, Teen Vogue, Allure and brands like Sephora, PrettyLittle Thing, and Olay, joins us to share her experiences, expertise, and advice when it comes…

What Do Genetic Counselors Do?

Genetic counselors help individuals and families understand genetic testing and empower them to make decisions about their health.

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…

Get Prepared for Election Season

It might be an off-year election, but many states and localities are still holding important contests that can shape policy in your area. Therefore, it’s important that your voice is heard! Everyone has a right to vote Federal law requires that every U.S. Citizen age 18 or older has a right to vote, regardless of…

Can Women and Girls Have Duchenne Muscular Dystrophy?

Awareness is spreading that women and girls can have Duchenne muscular dystrophy symptoms, but there’s more work to do.

The Journey to Self-Acceptance and Empowerment

When Morgan Roth went to see the new Barbie movie with her daughter, she was not expecting the film to have a significant, personal, and powerful impact on her – but that is exactly what it did. The film’s motifs resonated deeply with Morgan, inspiring her to write and publish a personal essay on LinkedIn,…

MDA Continues to Lead the Way on Newborn Screening

It is well known that the earlier a disease is diagnosed and treated, the better the outcomes. Consequently, for neuromuscular diseases, where damage to the muscle, neurons, or sometimes both, causes irreversible (at least at present) damage, an earlier diagnosis is critical. This is precisely why newborn screening, a public health program in which babies…

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 33- Wheelchair Barbie Talks Advocacy and Inclusion

In this Quest Podcast episode, we chat with a renowned journalist, model and disability rights activist, who lives with physical disabilities. Madison Lawson, who has been featured in publications including Vogue, Glamour, Teen Vogue, Allure and brands like Sephora, PrettyLittle Thing, and Olay, joins us to share her experiences, expertise, and advice when it comes…

Episode 32- Accessible Air Travel and Advocacy Updates

In this Quest Podcast episode, we chat with Mark Fisher, MDA’s Director of Advocacy Engagement and Michael Lewis, MDA’s Director of Disability Policy, an advocate who lives with physical disabilities. They join us to share the most recent air travel updates, advocacy information, and expertise and advise about MDA’s grassroots program and advocacy volunteer efforts….

Episode 31- ALS Podcast with Brooke Eby

In this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost 70,000 followers on Instagram alone hopes to spread awareness of ALS to as many people as possible.