‘Does ALS hurt?’ How I describe ALS symptoms and progression

Reflecting on what I did right after I was diagnosed with ALS

Every once in a while, a common question circulates on ALS social media sites: “What would you do differently if you were diagnosed today?” The replies are interesting and often filled with regrets, such as trips not taken or home modifications made too late. I’ve participated in these discussions…

US Senate ALS Caucus to advocate for policies, research

The bipartisan Senate ALS Caucus has been reestablished to heighten awareness of the needs of those living with amyotrophic lateral sclerosis (ALS), advance policies, improve patient support, and advocate for research investments. U.S. Sens. Chris Coons, D-Delaware, and Mike Braun, R-Indiana, reintroduced the caucus, which is now expanded with…

AAN 2023: Radicava leads to better long-term survival in ALS

Radicava (edaravone) significantly prolongs long-term survival for people with amyotrophic lateral sclerosis (ALS), according to an analysis of nearly 3,000 patients. It didn’t significantly slow the progression of disease symptoms, as assessed by scores on the ALS Functional Rating Scale-Revised (ALSFRS-R), however. The results were presented at last…