Genetic ALS: Discussing a difficult diagnosis

Finding humor lifts our spirits in life with ALS

My husband, Todd, and I work New York Times puzzles while we eat breakfast. Because Todd is paralyzed due to ALS, I feed him. We start with the Spelling Bee puzzle, which offers seven letters for you to make words with. There is always at least one word that…

FDA clears expanded access program for SPG302 in ALS patients

Spinogenix has received clearance from the U.S. Food and Drug Administration (FDA) to launch an expanded access program (EAP) for SPG302, its oral treatment for amyotrophic lateral sclerosis (ALS). EAPs, also known as compassionate use programs, allow people with serious or life-threatening conditions to access experimental therapies outside of…

A mayday call to raise awareness of ALS, this month and beyond

Fire the flare guns, turn on the ship-to-shore radio, and holler “Mayday! Mayday! Mayday!” That’s the first order of business for a ship that’s sinking. It needs attention — lots of attention. There’s even an official mayday relay procedure, which lets ships in the vicinity take turns relaying the distress…

Prilenia partners with Ferrer to advance pridopidine for ALS

Prilenia Therapeutics has entered a collaboration and license agreement with Ferrer to codevelop and commercialize pridopidine, its therapy candidate for neurodegenerative diseases like amyotrophic lateral sclerosis (ALS), in Europe and other select markets. The partnership comes as pridopidine nears an expected regulatory decision in the European Union, where…

Groups ask lawmakers to preserve National ALS Registry funding

ALS groups are asking lawmakers to preserve federal funding for the National ALS Registry and National ALS Biorepository, the first and only comprehensive nationwide resource to collect and analyze data for better understanding amyotrophic lateral sclerosis (ALS). “A recently leaked draft memo from the U.S. Department of Health and…

Aim this ALS Awareness Month is to amplify community voices

Across the U.S. and around the world, the amyotrophic lateral sclerosis (ALS) community is aiming to raise its voice in powerful ways this May during awareness month  — with advocacy campaigns, flag displays, the sharing of personal stories, and community-led events. ALS Awareness Month, according to supporters of those…