A new experience at home is especially meaningful with ALS

How 4 wheels and Velcro help me move through my ALS life

Like many ALS patients, I had a difficult time accepting assistive devices into my life. In my case, a pair of ankle-foot orthoses (AFOs), a rollator, and a mobility scooter challenged my adaptability and sense of myself. But over time, with lots of persistence and support from my caregiver…

Utreloxastat fails to slow ALS disease progression in Phase 2 trial

Twice-daily treatment with PTC Therapeutics’ oral candidate utreloxastat failed to significantly slow disease progression in adults with amyotrophic lateral sclerosis (ALS) in a global, placebo-controlled Phase 2 clinical trial. The results of CardinALS (NCT05349721) showed that, while the therapy was generally safe, it failed to meet its…

Brain scans may predict ALS risk in C9ORF72 mutation carriers

People with mutations in the C9ORF72 gene who develop amyotrophic lateral sclerosis (ALS) show signs of damage to certain brain regions years before the appearance of disease symptoms, a study reports. The findings suggest that looking for changes in brain structures could help predict which people with C9ORF72 mutations…

Why I can be thankful in the bad situation of life with ALS

As I drove through town, I cringed reading a church’s changeable-letter sign: “Be thankful for everything that happens to you. It’s all part of the experience.” There’s scientific evidence promoting the benefits of gratitude, so I try to practice it, but I get tired of counting my blessings…

My Santa wish list for holiday events and life with ALS

Dear Santa, here’s my special wish list for the holiday season. I’m not asking for toys or special treats, just your help in making my holiday social events blend better with my life with ALS. Specifically, I’m hoping you can help me when I attend social gatherings, dine in…

Widetrial to manage physician network for ibudilast EAP

Widetrial, an integrated service and technology platform, is coming on board to support an expanded access program (EAP) that will provide the investigational therapy MN-166 (ibudilast) to amyotrophic lateral sclerosis (ALS) patients who aren’t eligible for clinical trials. The program is funded under a $22 million federal…