Genetic ALS: Discussing a difficult diagnosis

Revisiting the past is bittersweet when living with ALS

As we head into the new year, I’ve been in decluttering mode. I sorted through my linen closet and discarded worn sheets and pillowcases. I sorted through files and found old tax returns, bank statements, and receipts, and I burned sensitive papers in my mom’s sauna stove. And then I…

Dosing begins in Phase 1 trial of potential ALS therapy RAG-17

A Phase 1 clinical trial testing RAG-17, an investigational therapy for people with amyotrophic lateral sclerosis (ALS) carrying mutations in the SOD1 gene, has dosed its first participant. The trial (NCT06556394) aims to determine the safety and tolerability, pharmacological properties, and preliminary signs of efficacy of multiple dose levels of…

Finding moments of warmth during the winter of ALS

I recently listened to a podcast called “The Art of Manliness.” The episode was titled “The Winter Mindset — How Norwegians Love the Winter (And You Can Too).” I could relate, because I live in a northern climate that receives over 200 inches of snow each year. Winters in Michigan’s…