Mary Chapman, features writer —

Columbia University researchers will use a $15 million federal grant to design individualized gene therapies for nine people with ultra-rare genetic forms of amyotrophic lateral sclerosis (ALS). The three-year grant comes from the National Institute of Neurological Disorders and Stroke’s (NINDS) Ultra-rare Gene-based Therapy (URGenT) Network, a program…

The Muscular Dystrophy Association (MDA) is marking its seven-decade partnership with the International Association of Fire Fighters (IAFF) with this year’s launch of Fill the Boot, a nationwide yearlong fundraising campaign supporting research, care, and advocacy for people with neuromuscular disorders such as amyotrophic lateral sclerosis (ALS).

A conference in July will feature “diverse perspectives,” including patient presentations and discussions featuring people living with amyotrophic lateral sclerosis (ALS) along with clinical and research experts. That’s according to the ALS Association, which said its inaugural ALS Nexus Conference will be held July 14-17 at the Gaylord Texan Resort &…

EverythingALS has introduced a platform aimed at advancing amyotrophic lateral sclerosis (ALS) research using artificial intelligence (AI) and machine learning — with the ultimate goal of eradicating the disease and restoring lost motor function to those with ALS and other neurodegenerative disorders. The collaborative and technology-enabled platform, dubbed…

Researchers at Mass General Brigham have started an effort to develop brain-computer interfaces (BCI) for people with neurological diseases or brain injuries, including amyotrophic lateral sclerosis (ALS). BCI technologies rely on a person’s unique brain signaling patterns to interpret their intentions, then use that information to control a device…

A disorder such as amyotrophic lateral sclerosis (ALS) can be confusing and traumatic for children, particularly if the person with the disease is a family member or close friend. A new animated short film, “LUKi & The Lights,” seeks to help young people understand and cope with the complexities…

Some 20 U.S. organizations with a focus on amyotrophic lateral sclerosis (ALS) have put their names on a letter that seeks to help shape Congressional funding priorities for the federal legislative fiscal year 2025 to better serve the ALS community. The correspondence from the nonprofits, sent last week, was…

An unprecedented $58 million donation to the ALS Association is a “beacon of hope” for the amyotrophic lateral sclerosis (ALS) community and will finance treatment centers, aid to financially strapped patients, and clinical trials of promising treatments, according to the U.S.-based nonprofit. The donation from the estate…

To reflect a new era of commitment and determination in the fight against amyotrophic lateral sclerosis (ALS), The ALS Association Greater New York Chapter has become ALS United Greater New York. The rebranding of the New York City-based nonprofit represents a break…

An initiative at a University of Illinois campus that aims to improve voice recognition software for people with speech difficulties is recruiting adults in the U.S. and Puerto Rico living with amyotrophic lateral sclerosis (ALS). Known as the Speech Accessibility Project, it is led by the Urbana-Champaign…