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Blog Post | News, Science + Research

Clinical Trial Alert: Biogen Seeks Participants for a Phase 3 SOD1-ALS Study

Researchers at Biogen are looking for participants with amyotrophic lateral sclerosis (ALS) to participate in the VALOR Phase 3 study designed to help researchers evaluate the effects of BIIB067 on…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Research


Blog Post | Science + Research

Do You Know ALS? Meet Dr. Cudkowicz.

Dr. Merit Cudkowicz, chief of Neurology at Massachusetts General Hospital, where the ALS Multidisciplinary Clinic in the Healey Center for ALS is associated with MDA, is dedicated to performing academic-led…

Tags: Drug Development, Grants, MDA Care Centers, Research


Blog Post | Personal Stories, Science + Research

Do You Know ALS? Meet Tim.

In 2016, former NFL player Tim Green was diagnosed with amyotrophic lateral sclerosis (ALS) and was private about his new life at first. Over time, Tim has become an advocate…

Tags: Clinical Trials, Community, Drug Development


Blog Post | News, Science + Research

FDA Approves AveXis’ Zolgensma for Treatment of Spinal Muscular Atrophy in Pediatric Patients

Today, the U.S. Food and Drug Administration (FDA) approved Zolgensma (onasemnogene abeparvovac-xioi), the first gene therapy for a neuromuscular disease. Zolgensma is a one-time intravenous (into the vein) infusion for the…

Tags: Clinical Trials, Drug Approval, Gene Therapy, Research, Research Advances


Blog Post | News, Science + Research

JAMA Neurology Publishes Article on Newborn Screening and Neuromuscular Disorders

Earlier this week, JAMA Neurology published an article co-authored by Muscular Dystrophy Association (MDA) staff members that addresses the role of newborn screening (NBS) in the field of neuromuscular disease.…

Tags: Newborn Screening


Blog Post | Personal Stories, Science + Research

Do You Know ALS? Meet Sunny.

Just two weeks before her 28th birthday, and after a long search for an explanation for a series of symptoms, Sunny Brous was diagnosed with amyotrophic lateral sclerosis (ALS). Sunny…

Tags: MDA Care Centers, Relationships


Blog Post | Advocacy, Get Involved

Support ALS Patients: Tell Congress to Pass the ALS Disability Insurance Act Today

Amyotrophic lateral sclerosis (ALS) is a neuromuscular degenerative disease that causes rapid muscular atrophy. It progresses quickly, and patients need access to all available support as soon as possible. Currently,…

Tags: Advocacy Updates, Insurance, MDA Care Centers


Blog Post | Science + Research

Do You Know ALS? Meet Dr. Glass.

Dr. Jonathan Glass is the director of the Emory ALS Center, co-chair of the Northeast ALS Consortium, and professor of Neurology and Pathology at Emory University in Atlanta. Dr. Glass’…

Tags: Gene Therapy, MDA Care Centers, Research


Blog Post | Personal Stories, Science + Research

Do You Know ALS? Meet Jim.

In 2015, Karen Condron was honored with MDA’s prestigious Wings Over Wall Street Spirit Award in recognition of her passion for life — while fighting amyotrophic lateral sclerosis (ALS). It…

Tags: Fundraising, Relationships


Blog Post | Personal Stories, Science + Research

Do You Know ALS? Diagnosing the Disease is an Odyssey.

While most visits to the doctor lead to a quick diagnosis, the same is not so for amyotrophic lateral sclerosis (ALS). On average, getting an ALS diagnosis takes 12 months…

Tags: Clinical Trials, MDA Care Centers