Avicenna gets patent for ROCK inhibitor compounds for ALS, more

Getting good sleep is challenging with ALS

Handling night care has been one of the hardest parts about managing ALS for my husband, Todd, but now I’m hopeful because he’s been training himself to sleep on his back. Todd has been a side sleeper, and for years he had to be turned from side to side…

Long-term use of NurOwn shows survival benefit in ALS: New data

Long-term treatment with the cell therapy NurOwn (debamestrocel) was found to significantly extend survival in people with amyotrophic lateral sclerosis (ALS) when compared with a matched control group from previous clinical trials, according to new data. That data, from an expanded access program (EAP), was shared by NurOwn’s…

The sensation of a hum was one of my early symptoms of ALS

Hmmmmm. That’s what my body feels when it’s doing its “humming thing.” It’s an all-over buzzy sensation that I chalk up to being another quirky symptom of my ALS. It’s a feeling I’ve never mentioned during my ALS clinic visits, mainly because I want to keep the visit rolling along…

ALS respiratory data now available to researchers worldwide

A database integrating long-term respiratory data with natural history data from people with amyotrophic lateral sclerosis (ALS) has been made available to scientists globally, with the hopes of accelerating research and the discovery of new therapies. Developed under a collaboration between the nonprofit Target ALS and Zephyrx, the…

Woolsey gets 3 US patents covering ROCK inhibitor Bravyl

Woolsey Pharmaceuticals has received three new U.S. patents covering innovations related to Bravyl (oral fasudil), its investigational  amyotrophic lateral sclerosis (ALS) medication. The patents cover the use of oral fasudil to slow the progression of sporadic ALS, as well as solid and liquid formulations of fasudil for people…

Recognizing the signs of angels who walk among us

A few weeks after my late husband, Jeff, was diagnosed with ALS in 2018, we were sitting in our primary care doctor’s office to talk. We’d just received a second opinion confirming the diagnosis, and we were reeling. I remember how brutal the appointment felt for all three of us.

Radicava ORS slows ALS disease progression, improves survival

Treatment with Radicava ORS (edaravone) significantly slowed declines in physical function and improved survival outcomes for people with amyotrophic lateral sclerosis (ALS) compared with historical controls from the PRO-ACT database who’d received a placebo in previous clinical trials. The findings were presented by Mitsubishi Tanabe Pharma…