Archives
Quest Podcast: Fashion for Every Body: Izzy Camilleri on Style, Function, and Inclusion
In this Quest Podcast episode, we chat with internationally recognized fashion designer Izzy Camilleri, a true pioneer in adaptive fashion. She shares how her successful career in high-end fashion took…
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Simply Stated: Updates in X-Linked Myotubular Myopathy (XLMTM)
X-linked myotubular myopathy (XLMTM) is a rare, inherited neuromuscular condition that primarily affects infant males. It is one of the most severe forms within a group of disorders called centronuclear…
Tags: Simply Stated
What Is a VUS? Variants of Unknown Significance in Genetic Testing and Why They Matter
What should you do if you have a variant of unknown significance in genetic testing results? Hear from experts in the neuromuscular field.
Considering a Clinical Trial? 4 Things to Know Before You Enroll
Tips for participating in neuromuscular clinical trials and research studies, from MDA community members who have been there.
Tags: Clinical Trials, Research, Thrive 365
Expert Tips for Handling an Insurance Claim Denial for Gene Therapy
Follow these steps to appeal insurance denials for gene therapy, or any neuromuscular disease treatment, and improve your chances for approval.
Tags: Drug Approval, Featured Content, Gene Therapy, Healthcare, Insurance, MDA Resource Center, Resources
Understanding Thymidine Kinase 2 Deficiency
Michio Hirano, MD, answers questions about TK2d, a rare mitochondrial myopathy with a new therapy approved by the FDA.
Tags: Drug Approval, Healthcare, MDA Care Centers, Research, Spotlight
RNA Therapies Offer Keys to Treating Genetic Neuromuscular Diseases
RNA therapies offer new hope for neuromuscular diseases, targeting faulty proteins without permanently altering DNA.
Young Leader Living with Muscular Dystrophy Champions Aiming High and Setting Goals
Caroline LeMay, a Harvard graduate living with a disability, knows the importance of education to achieve her dreams.
Tags: College, Education, Employment, Quest for Success, Young Adults
Progress Now: Research Updates and Breakthroughs
Tracking research updates and breakthroughs that help accelerate treatments and cures across MDA diseases.
Tags: Research, Research Advances
MDA Clinical & Scientific Conference Sessions Drive Innovation in Neuromuscular Care
Discoveries presented at the MDA Clinical & Scientific Conference can shape the future of neuromuscular care.