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Blog Post | Health, Science + Research

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…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Healthcare, Innovation, Research, Research Advances


Blog Post | Advocacy, Get Involved, Independence, Lifestyle

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…

Tags: Community, Employment


Blog Post | Inclusion, Lifestyle

FestAbility Celebrates Disability Pride and Community

A family enjoys dessert at the 2022 FestAbility event. Photo credit: FestAbility. As the 2023 FestAbility event approaches, Sarah Schwegel is excited to once again gather, connect, and celebrate with…

Tags: Community


Blog Post | Health, News

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…

Tags: Gene Therapy, Healthcare, Insurance, MDA Care Centers, MDA Resource Center, My Gene Therapy Journey, Resources


Blog Post | Health, Science + Research

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…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Healthcare, Innovation, Research, Research Advances


Blog Post | Lifestyle

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…

Tags: Community, Employment, Volunteers, Year of the Volunteer


Blog Post | Finding a Diagnosis, Health, Science + Research

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


Blog Post | Health, Science + Research

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…

Tags: Healthcare, Innovation, Research, Research Advances, Research Study Alert


Blog Post | Health, Science + Research

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…

Tags: Drug Development, Healthcare, Innovation, Research, Research Advances


Blog Post | Advocacy, Get Involved, Inclusion, Independence, Lifestyle, Personal Stories

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