New ALS research effort aims to speed search for treatments

Several nonprofits are uniting to fund new research aimed at identifying targets for the treatment of amyotrophic lateral sclerosis (ALS). The new initiative will be led by the Allen Institute, a nonprofit medical research organization, through its Brain Health Accelerator — a research initiative to study neurodegenerative diseases. The…

My husband, Todd, and I just finished watching the TV series “Person of Interest,” about a type of super artificial intelligence (AI) that predicts crime. The series, which ran from 2011 to 2016, was prescient about current issues resulting from AI and mass surveillance. In the penultimate episode, one of…

PAS-004, an experimental therapy that Pasithea Therapeutics is developing to address inflammation and TDP-43 protein clumps, has received orphan drug designation by the U.S. Food and Drug Administration for the treatment of amyotrophic lateral sclerosis (ALS). The status aims to accelerate the development of therapies for rare diseases, or…

I am always looking for ways to simplify my life and help my days go by a bit more smoothly. But when you live with ALS, like I do, there is always one extra thing to do, plan, or think about before you can even begin an activity. It’s…

An arm of the HEALEY ALS platform trial testing Neurizon Therapeutics’ experimental therapy NUZ-001 as a treatment for amyotrophic lateral sclerosis (ALS) is expanding enrollment from 160 to as many as 240 participants. The decision follows enrollment that exceeded original expectations and the absence of another HEALEY regimen…

Regulatory authorities in the Netherlands have given the green light for a clinical trial testing Ability Neurotech‘s experimental brain-implantable technology as a way to restore communication and speech in people with amyotrophic lateral sclerosis (ALS). The study is designed to assess whether the system can support independent communication…

Tomorrow, June 2, is Lou Gehrig Day, an annual event that honors the life and legacy of Lou Gehrig, the record-setting baseball player who died from amyotrophic lateral sclerosis (ALS) more than 80 years ago. Major League Baseball (MLB) designated June 2 to honor Gehrig because it marks when…

French actor Pierre Deny, known for his role in the Netflix streaming series “Emily in Paris,” has died from amyotrophic lateral sclerosis (ALS) at age 69. “It is with deep emotion that we announce the passing of Pierre Deny, which occurred this Monday following a sudden and severe case of…

Every May for the past five years, the nonprofit I AM ALS hosts a summit to raise ALS awareness, the hallmark of which is a display of 6,000 small blue flags planted on the National Mall in Washington, D.C. Each flag represents a person who is living with…

You don’t know what you don’t know. Sometimes I feel like we are flying blind. Maybe we are. Maybe because we live in a rural area and don’t have access to an ALS clinic, we are just figuring things out as we go. When my husband, Todd, was diagnosed…