Relyvrio (sodium phenylbutyrate and taurursodiol) is an oral treatment approved in the U.S. and Canada to help slow disease progression in adults with amyotrophic lateral sclerosis (ALS). The therapy has been shown in clinical trials to reduce functional decline and to significantly extend patient survival.
The U.S. Food and Drug Administration (FDA) has agreed on the design of a Phase 3b trial that will test the investigational cell-based therapy NurOwn (debamestrocel) in amyotrophic lateral sclerosis (ALS) patients with less advanced disease. The developer, BrainStorm Cell Therapeutics, plans to launch the trial…
Adapt, adapt, adapt! Readers of this column know that’s one of my favorite mottos. I depend on it, especially because I live with ALS. It helps me deal with the condition’s ongoing changes and keeps me moving forward. But sometimes I have to push back. And when…
SLS-005 did not significantly slow amyotrophic lateral sclerosis (ALS) progression compared with a placebo in the HEALEY platform trial, according to top-line data showing that the experimental therapy did not ease functional declines nor extend patient survival. The therapy, developed by Seelos Therapeutics, also failed to slow…
I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had ALS for nearly 14 years. She’s just a few years into life with ALS, and her husband uses a power wheelchair and speech-generation technology and receives ventilation…
Last week I hit a milestone of sorts: my 35th ALS clinic visit. That’s not to say that medical appointments deserve the same recognition as birthdays or graduations, to be memorialized in a scrapbook. But because ALS has been a dominant part of my life for the past…
When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the…
A conference in July will feature “diverse perspectives,” including patient presentations and discussions featuring people living with amyotrophic lateral sclerosis (ALS) along with clinical and research experts. That’s according to the ALS Association, which said its inaugural ALS Nexus Conference will be held July 14-17 at the Gaylord Texan Resort &…
A biomarker test that identifies abnormal protein fragments called cryptic peptides may help detect amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) in the early stages, a study found. Cryptic peptides from the HDGFL2 protein were elevated in fluid samples from people with ALS/FTD, including in those who had…
The ALS Association is partnering with MyTomorrows, a global health technology company, to make it easier for people with amyotrophic lateral sclerosis (ALS) to find and participate in clinical trials, and to know about “pre-approval treatment options,” the company said in a press release. The collaboration…
