Funding Expands Access to SLS-005 Via Compassionate Use

Seelos Therapeutics is planning to launch an expanded access program (EAP) that gives people with amyotrophic lateral sclerosis (ALS) who are not eligible for clinical trials the opportunity to access the company’s investigational therapy SLS-005. The program will be conducted in collaboration with the Sean M. Healey &…

On my daily walk, I take a detour from the field and into the woods because I’m on the hunt for birch bark and pine cones. It’s the season for collecting natural accents to use on my Christmas wreaths, which I’ll start making in a month. I sell them…

Biohaven‘s therapy candidate verdiperstat did not significantly slow functional decline among people with amyotrophic lateral sclerosis (ALS) in the HEALEY ALS platform trial, failing to meet its primary goal, data show. Key secondary efficacy goals, such as survival and changes in lung function and muscle strength, also were…

Cytokinetics has launched its fifth annual Communications Grant Program to support patient advocacy groups working with amyotrophic lateral sclerosis (ALS) and other communities. A total of five $20,000 grants will be given to winning organizations to help them improve their outreach and patient engagement. The deadline for applications…

Hoo-wee! Am I glad summer is over. Not because of any changes or challenges from my ALS, but because of a series of unexpected life events. This year, my summer months felt as if I were on an airplane that hit turbulence, and the “fasten your seat belt” sign…

Treatment with a 30 mg dose of CNM-Au8 significantly reduced the risk of death, and the risk of death and permanent assisted ventilation, by more than 90% among people with amyotrophic lateral sclerosis (ALS), according to new top-line data from the CNM-Au8 arm of the HEALEY ALS platform…

Using a digital tool to assess disease severity remotely is feasible for people with amyotrophic lateral sclerosis (ALS) and may improve patient monitoring between visits to the clinic, a study suggests. The tool makes the revised ALS Functional Rating Scale (ALSFRS-R) available to patients via a computer or mobile…

When Juan heard, "you have ALS," his world went spinning. He learned how the right support could help him face his new challenges. Hear how his family and the ALS community rallied around Juan when he needed it most.

Note: This story was updated Sept. 30, 2022, to correct the spelling of Albrioza and clarify the FDA advisory committee voted in March that the evidence from CENTAUR was not sufficient to support Relyvrio’s efficacy in ALS. It also added Relyvrio’s list price is set at about $158,000 per year.

ALS is notoriously relentless on the human body. But it can be equally brutal on our emotions, and for my late husband and me, this was especially true when he was diagnosed. When people ask about the process of Jeff’s ALS diagnosis, I usually recount the chronological story…