Two years after my husband, Todd, was diagnosed with ALS, I read an article that gave me hope. An Israeli rabbi who had ALS saw improvement with NurOwn, an experimental stem cell treatment by BrainStorm Cell Therapeutics. The man went from being in a wheelchair to walking. I…
The European Patent Office will grant MediciNova a patent that covers the combination of MN-166 (ibudilast) and riluzole for the treatment of amyotrophic lateral sclerosis (ALS), MediciNova announced. The patent, once issued, will cover a wide range of doses and dosing regimens for both medications, and it…
SOL-257, an experimental gene therapy developed by SOLA Biosciences, delayed disease progression and prolonged the lifespan of a mouse model of amyotrophic lateral sclerosis (ALS). The gene therapy is designed to reduce the abnormal TDP-43 protein that forms toxic clumps in the cells of ALS patients. “Targeting only…
“I didn’t even know ALS existed until I was told I had it.” That’s what most patients say when telling their ALS story. I said the same thing when asked to share my story at an event in 2010, and I hear the same thing from others today, 11 years…
A Phase 3 clinical trial evaluating Orphazyme’s investigational oral therapy arimoclomol for amyotrophic lateral sclerosis (ALS) has failed to meet its primary and key secondary goals. While no safety issues were reported in the trial (NCT03491462), arimoclomol did not significantly extend patients’ lives nor…
Jan Veldink, a neurologist from the Netherlands whose work in the genetics of amyotrophic lateral sclerosis (ALS) has led to important discoveries about disease risk, won the 2021 Sheila Essey Award, according to a blog post from the ALS Association. The $50,000 award was presented at the recent…
A Phase 2 clinical trial evaluating oral RT001 — Retrotope’s experimental synthetic fatty acid — as a treatment of amyotrophic lateral sclerosis (ALS) is fully enrolled, the company announced. The enrollment target of 40 patients was met, and exceeded, ahead of its scheduled six weeks. Dosing began…
In the summer of 2014, people across the world dumped water over their heads in the ALS ice bucket challenge and shared videos of the experience on social media. Our son, Isaac, who was 4 at the time, did it, saying, “I’m having my aunties and uncles do the…
A combination of guanabenz — an approved therapy for high blood pressure — plus riluzole slowed disease progression in adults with early amyotrophic lateral sclerosis (ALS), particularly those with bulbar onset disease, a form of ALS, according to data from a Phase 2 clinical trial. Despite these promising benefits, the…
“Everybody’s talkin’ at me, Can’t hear a word they’re sayin’, Only the echoes of my mind.” – Fred Neil ALS has rendered me a minimalist creature of habit. My weekday routine includes the intersection of paranoid caution, practiced routine,…
