What Happens When We Compare Our Lives With ALS

What Happens When We Compare Our Lives With ALS

When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with…

ALS Association Supports FDA Reconsidering AMX0035 Decision

The ALS Association is applauding the recent change of heart by the U.S. Food and Drug Administration (FDA) to consider AMX0035’s approval for amyotrophic lateral sclerosis (ALS) without requiring results from an additional clinical trial. Earlier this year, the agency had requested data from a placebo-controlled Phase 3 trial,…

Fear Can Be a Double-edged Sword

“Fear takes control — fear of the unknown Aware of what will hurt you You’re prepared to remain this way So sad yet safe with your afflictions Afraid to start a brand new day.” Those lyrics from the song “Fear (Of the Unknown)” by British alternative band Siouxsie and…

Motor Neurone Disease Association Earns High Praise

The United Kingdom-based Motor Neurone Disease (MND) Association was commended recently at the Third Sector Awards for its efforts in the MND community. The nonprofit organization won high commendations in the “Charity of the Year: Over £5M” category at the annual awards, which recognizes the achievements of charitable organizations and…

Two Tests May Be Better Than One at Predicting Survival

The two most common measures used in amyotrophic lateral sclerosis (ALS) assessments — the ALS functional rating scale-revised (ALSFRS-R) and forced vital capacity (FVC) — can predict survival more accurately when used together, according to a recent study. Alone, these measures had a similar predictive ability, but the weak…

Just Another Day in Life With ALS

I inspected the fish through the curved glass of a refrigerated display case. Wild-caught Lake Superior whitefish and trout — both raw and smoked — lay in metal trays. “I’d like that piece of smoked trout in the middle. Underneath the top one,” I specified. I picked a plump…

Phase 1b Trial of Oral DNL343 in ALS Patients Begins Dosing

A Phase 1b clinical trial evaluating the safety and pharmacological profile of DNL343, Denali Therapeutics’ investigational oral therapy, in adults with amyotrophic lateral sclerosis (ALS) has started dosing participants. The study (NCT05006352) is currently recruiting patients at the Centre for Human Drug Research (CHDR) in Leiden, Netherlands.