Guest Voice: Finding purpose in fundraising for ALS

Guest Voice: Finding purpose in fundraising for ALS

Anita Newton is a retired science teacher who lives near Bristol, England. She taught chemistry for 30 years before retiring when her husband, Craig, was diagnosed with ALS. Her interests range from sports like pickleball, badminton, and table tennis to reading, writing, painting, and crafting. She also enjoys traveling…

MDA 2025: INS1202 gene therapy shows promise in SOD1-ALS mice

A single dose of Insmed’s investigational gene therapy INS1202 preserved motor function and prolonged survival in a mouse model of amyotrophic lateral sclerosis (ALS) associated with SOD1 gene mutations. The therapy was also found to protect against nerve cell loss and had other beneficial effects on disease-related biomarkers.

Finding what’s unique about each person with ALS

After decades of classic cross-country skiing, I realized that the groomed track is too wide for me, and it got me thinking how difficult it is to find single solutions to help everybody with ALS. We had springlike weather this past week in Michigan’s Upper Peninsula, and I got…

How I stay in my lane when writing about ALS

The phrase “stay in your lane” is often posted on signs to help motorists drive through a construction zone. It’s also a basic rule when swimming side by side in a race with other competitors. In my life with ALS, I use one of the other meanings of the…

Cognixion seeks ALS patients for clinical trial of BCI headset

Cognixion is recruiting adults with amyotrophic lateral sclerosis (ALS) for a clinical trial testing ONE Axon-R, a wearable headset that combines augmented reality and brain-computer interface technology with an artificial intelligence (AI) application to facilitate communication. Launched early this year at a single site in the U.S., the…

Smartphone app may help in monitoring ALS beyond clinic visits

Using a smartphone app to self-assess ALS Functional Rating Scale-Revised (ALSFRS-R) scores, a standardized measure of amyotrophic lateral sclerosis (ALS) severity, may be as reliable as clinic-based assessments, a study reports. Its findings suggest this app could be a useful digital tool for remote monitoring of ALS, allowing patients…