A story of a family’s loss offers guidance amid my grief with ALS

The outside temperature was cold, just 15 F, but the sun was shining, so I decided to forgo my elliptical machine and instead walk down our country road. I checked on my husband, Todd, to make sure it was OK to leave, and then slid into my snow pants and…

Insmed has launched a first-in-human clinical trial evaluating its experimental gene therapy INS1202 in people with amyotrophic lateral sclerosis (ALS). The Phase 1 study, called ARMOR (NCT07290062), aims to enroll about 23 adults with ALS, ages 18 to 80, who have been living with the disease for…

I was recently asked: “If you could reduce uncertainty in one area of your life with ALS, which would it be?” I took a few moments to think, then blurted out: “Keep my current symptoms exactly as they are. No more changes, no more surprises.” What? No wanting…

At this year’s Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, researchers and clinicians are talking about the central role of patients, families, and caregivers in driving change for people living with neuromuscular diseases. Bionews, the parent company of this site, sat down with John F. Crowley, president and…

An experimental nerve-protecting therapy called RT1999 (smilagenin) will soon be tested in people with amyotrophic lateral sclerosis (ALS) as part of a U.K. platform trial designed to quickly screen potential ALS treatments. The study, called EXPERTS-ALS, is testing several experimental ALS therapies…

Chris was diagnosed with ALS in 2024. Before that, he spent 40 years in the oil and gas industry, working and living in eight countries across five continents. He’s dedicated himself to helping others with ALS move forward. This content is sponsored by Tanabe Pharma America, Inc. (TPA) and is…

People with amyotrophic lateral sclerosis (ALS) who were exposed to smoke from wildfires prior to developing the disease are more than twice as likely to experience respiratory failure or death, according to a new analysis. The findings underscore the need for further research to understand how air pollution and…

The ALS Network will continue to host its ASK ME webinar series throughout 2026, featuring expert-led sessions on advocacy, care, research, and daily life with amyotrophic lateral sclerosis (ALS). This…

A specific alteration in the TDP-43 protein can reduce the viability of nerve cells in a lab model of amyotrophic lateral sclerosis (ALS), causing problems with energy generation and molecular transport within the cell, a new study finds. Notably, however, researchers found that this mutation does not cause TDP-43 protein…

There are both big and little losses that come with ALS, for the person with the disease and their family. Each stage of the disease brings something new to grieve. When my husband, Todd, was diagnosed in 2010, one of our biggest losses was the future that we…