Last week, I fully intended to write a new “Living Well With ALS” column. I sat down, flipped open my laptop, gazed out the window, and got lost in a stare. As the minutes ticked by, my computer screen finally clicked off, my mind blanked out, and I had…
Positive self-talk helps me stay motivated when I need it
A machine learning analysis of gene activity in spinal cord samples from people with amyotrophic lateral sclerosis (ALS) revealed new genes associated with the neurodegenerative disorder, a study reports. The newly identified genes included those involved in the function of energy-producing mitochondria, lipid (fat) and iron metabolism, and the…
New York received the highest mark on the ALS Association’s latest report cards, which grade states based on how effectively they’re using public policy to serve the amyotrophic lateral sclerosis (ALS) community. In the state policy report cards, New York was the only state to earn…
NP001 (sodium chlorite) was associated with a significant survival benefit among a subset of amyotrophic lateral sclerosis (ALS) patients who did not show signs of disease progression when treated with the investigational therapy in Phase 2 clinical trials, according to new data from the two studies. In this group…
I was enchanted on the first date with my late husband, Jeff, when our conversation turned to work. It’s an odd thing to say, because we can be conditioned to believe that work should be a less important aspect of our lives. But what I noticed in Jeff was a…
Zydus Lifesciences has been cleared by the U.S. Food and Drug Administration (FDA) to initiate a Phase 2b trial testing its experimental oral treatment usnoflast in people with amyotrophic lateral sclerosis (ALS). The trial is expected to enroll 210 ALS patients. Each will receive one of two usnoflast…
For more than a decade living with my husband Todd’s ALS, I’ve been the finder and procurer of equipment that makes both of our lives better. Since disease progression has made travel to our closest ALS clinic too difficult, we’ve had to figure out how to manage the…
The U.S. Food and Drug Administration (FDA) has lifted the clinical hold on a Phase 1 clinical trial that’s testing AMX0114, Amylyx Pharmaceuticals’ investigational treatment for amyotrophic lateral sclerosis (ALS). The hold came in November after Amylyx asked to initiate the first-in-human studies for AMX0114 at a starting…
The ALS Association this summer will host the second edition of its ALS Nexus, a conference bringing together researchers, healthcare professionals, advocates, patients, and caregivers in a quest to make amyotrophic lateral sclerosis (ALS) a more livable disease. The ALS Nexus 2025 event will take place Aug.
Qalsody (tofersen) halted disease progression and improved functional independence and mobility in people with amyotrophic lateral sclerosis (ALS) who received the treatment in a real-world setting, according to a study involving seven patients carrying mutations in the SOD1 gene. Data also showed robust and sustained declines in markers of…
Recent Posts
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- US clinical trials lack diverse representation of ALS patients
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