Glen Rouse

Aug 10, 2024

Glen passed away on August 5, 2024. Below is his story in his own words. I was diagnosed with ALS in September, 2020. I’m a member of the I AM ALS Clinic Trials and Legislative Affairs Team.  I was enrolled in the HEALEY Platform trial in the regimen B arm, have...

Bev Given

Aug 10, 2024

Her favorite place in the world was on a beach, so I arranged for us to go to Jamaica for our 43rd anniversary. My wife Bev was diagnosed with Bulbar ALS December of 2020 at the Scottsdale Mayo Clinic. Bev taught 6th grade Gifted and Talented classes for 34 years and...

John Reed

Aug 10, 2024

Throughout our journey we advocated for ALS showing what our journey was like and helping others through social media. My husband John was diagnosed in 2013 when symptoms of slurred speech started. John chose to receive a feeding tube in 2014 and a trach in 2015....

Christine Chromiak

Aug 10, 2024

It’s crazy to have a terminal illness, and then to be let go- given nothing to do about it. It made me feel lost. No pills. No treatment. Nothing I could do to make it better. Just try to live with this incredible weight on my shoulders. Update: Christine passed away...

James Henderson

Aug 10, 2024

He was a builder, a technician, and a teacher. A loving husband and father. James was diagnosed with ALS just as the Covid pandemic began in 2020. We knew something was different two years prior but couldn’t get any answers. We chalked it up to getting older, working...