Clinical Trial Alert: Phase 2/3 Study of an Investigational Medication in Pediatric Patients with Generalized Myasthenia Gravis

Researchers at Janssen Research & Development, LLC are seeking pediatric patients from 2 to less than 18 years of age who have generalized myasthenia gravis (gMG) with symptoms despite receiving stable, standard‐of‐care therapy, to participate in a phase 2/3 clinical study also known as vibrance ‐ mg. The study will evaluate the safety and efficacy…

Job Searching With a Disability | How to Prepare for the Interview Process

For job seekers with disabilities, the job search may include questions and challenges that others may not regularly come up against. In addition to wondering whether the roles you’re applying for are a fit, you may also be concerned about how to discuss your disability with potential employers during a job interview. Should you bring…

FestAbility Celebrates Disability Pride and Community

As the 2023 FestAbility event approaches, Sarah Schwegel is excited to once again gather, connect, and celebrate with members of the disability community. Sarah, who lives with spinal muscular atrophy Type II (SMA), is one of the founders of this one-of-a-kind, unifying, disability event held each year in St. Louis. Festability is the nation’s largest…

Insurance Denials for Gene Therapy Treatment Delay Access to Care

The FDA approval of ELEVIDYS (delandistrogene moxeparvovec-rokl), the first-ever, gene therapy treatment for young boys living with Duchenne muscular dystrophy (DMD), brought unprecedented hope to families living with DMD. Designed to target the underlying cause of the disease and significantly limit symptoms and progression, access to the gene therapy treatment has the potential to truly…

Clinical Trial Alert: Phase 3 Study of Batoclimab in Adults with MG

Researchers at Immunovant are seeking adults who have mild to severe generalized myasthenia gravis (MG) to participate in a phase 3 clinical trial (FLEX) to evaluate the safety and efficacy of the investigational drug, batoclimab (IMVT1401), to treat MG. Batoclimab is a therapeutic antibody that is being evaluated for the ability to improve disease symptoms in…

Company Volunteer Time Off Programs Benefit Everyone

As many employers recognize the benefit of volunteerism, more and more companies are beginning to offer Volunteer Time Off (VTO) programs. VTO programs offer employees the opportunity take time off from work to volunteer for meaningful causes and dedicate time to giving back to their communities. From small businesses to large conglomerates, providing time for…

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 just individual limbs, and can last from minutes up to hours or days. They are often triggered by diet or behavior and can seriously impact…

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…

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.

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Clinical Trial Alert: Phase 2/3 Study of an Investigational Medication in Pediatric Patients with Generalized Myasthenia Gravis

By Sujatha Gurunathan | October 4, 2023
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By Idealist | October 2, 2023
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By Sujatha Gurunathan | September 29, 2023
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Simply Stated: Research Updates in Periodic Paralysis

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By Sujatha Gurunathan | September 22, 2023

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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.

See All Episodes

Episode 33- Wheelchair Barbie Talks Advocacy and Inclusion

September 14, 2023

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

August 10, 2023

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

July 19, 2023

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.