A few weeks ago, I was driving out of my neighborhood when I noticed a sheriff’s car passing me slowly, headed in the direction I’d come from. Reflexively, I made a U-turn and began following the officer, dreading the bad news that I was sure he was headed to my…

I’ve previously written about sleeping and described how bedtime is one of my most anticipated periods of the day. In this column, I’d like to go a little deeper and get some feedback from other ALS patients. Do you remember the Julia Roberts movie “Sleeping with…

“I’ve learned a lot of stuff I wish I’d known 30 years ago,” my husband, Todd, said after eating a meal of baked fish that I’d first brined, per his suggestion. Todd is paralyzed because of ALS, and he uses a noninvasive ventilator. His neck is too weak…

Losing the ability to smell with amyotrophic lateral sclerosis (ALS) is significantly associated with worsening cognitive function, a new study in China finds. The association was particularly evident in ALS-related functions such as language, verbal fluency, and executive function, that is, a set of mental skills that helps people…

How do you handle an unexpected change to your plans for the day? Do you shake your fist in the air and complain, or pause and look for opportunities? Last week, I was doing a little of both. I have ALS, and even though all of my life plans…

Researchers have identified gene activity changes that might explain why motor nerve cells selectively degenerate in amyotrophic lateral sclerosis (ALS), offering insights into the development of new therapeutic targets for the neurodegenerative disease. In postmortem brain tissue, a particular group of these cells known to be lost in ALS…

A Phase 2a clinical trial investigating Woolsey Pharmaceuticals‘ oral treatment Bravyl in people with amyotrophic lateral sclerosis (ALS) has dosed the first patient in the high-dose group, kicking off the next stage of the study. The REAL clinical trial (NTC05218668) already showed signs of slower disease progression…

“I didn’t realize how weak my voice was until I was in a room full of chatter and background noise,” my husband, Todd, said after we had a stream of visitors for the past month and a half. At the end of May, many of my husband’s extended family came…

The ALS Therapy Development Institute (ALS TDI), a nonprofit biotech, has developed a comprehensive resource designed to help people with amyotrophic lateral sclerosis (ALS) find ongoing clinical trials applicable to their condition and location. Dubbed the ALS Trial Navigator, the new tool uses mapping technology from Esri,…

New research into the molecular underpinnings of amyotrophic lateral sclerosis (ALS) has uncovered sex differences and disease subtypes, which could inform the development of new and more targeted treatment strategies. Comprehensive analyses of ALS brain tissue samples and mouse models also identified the MAPK/ERK cell signaling pathway as a possible…