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Simply Stated: Research Updates in Periodic Paralysis
Periodic paralysis (PP) is a rare genetic condition that causes sudden, temporary episodes of muscle weakness, stiffness, or paralysis (inability to move). These episodes may affect the whole body or…
Tags: Healthcare, Innovation, MDA Resource Center, Research, Research Advances, Resources, Simply Stated
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…
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…
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…
Tags: Community, Relationships, Staying Active, Young Adults
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…
Tags: In Case You Missed It
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…
Tags: Advocacy Updates
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
Morgan Roth, Chief Marketing Officer at MDA When Morgan Roth went to see the new Barbie movie with her daughter, she was not expecting the film to have a significant,…
Tags: Community
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,…
Tags: Advocacy Updates, Caregiving, Community, Genetic Testing, Healthcare, Innovation, Newborn Screening, Parenting