New Method Described in Thesis Can Help Characterize and Target Misfolded Protein in ALS

Wisdom from Champions to Silence My Inner Judges

Sometimes living with ALS makes me feel like I’m competing in the Olympics. I wake up in the morning and wonder how my body will perform that day. Then I lie awake at night rehashing all the things that went wrong. The voices in my head often sound…

Retrotope’s Experimental RT001 Now Available for ALS Under Expanded Access Program

Retrotope is providing its investigational fatty acid being developed for Friedreich’s ataxia, RT001, to people with amyotrophic lateral sclerosis (ALS) under an expanded access program, also called “compassionate use.” Individual patients with life-threatening or severely debilitating diseases can petition the U.S. Food and Drug Administration, through their physicians,…

Minding My Manners: ALS and Etiquette

“Manners are a sensitive awareness of the feelings of others. If you have that awareness, you have good manners, no matter what fork you use.” ―Emily Post In case we ever meet, I want to apologize in advance if I ever appear insensitive to, or unaware of, your feelings. That is…

The ALS Workaround Dilemma

If you’re like me and live with ongoing physical changes from ALS, you’ve probably used workarounds. What is a workaround? A workaround is a creative, temporary solution that solves an everyday problem. For example, in the real world, folks put red duct tape over a broken tail light…