Bill Nuti, the former CEO and chairman of NCR Corporation, is on a mission to eliminate amyotrophic lateral sclerosis (ALS). Nuti, who stepped away from NCR in 2018 after being diagnosed with ALS, has launched CureALS, a nonprofit that will draw on funding, partnerships, data sourcing, and artificial intelligence…
Every once in a while, I step onto my soapbox (mine has special safety rails) to voice my view about an important issue in the ALS community. This time, I’m here with praise for “ALS and Mental Health,” an article recently published in ALS News Today. In my…
A messenger RNA (mRNA) molecule that provides the instructions for a protein involved in glutamate signaling is not edited as efficiently in amyotrophic lateral sclerosis (ALS) patients as in people without the neurological disorder, according to a new study suggesting its potential use as an ALS biomarker. Glutamate is…
Apellis Pharmaceuticals’ investigational therapy pegcetacoplan (APL-2) has failed to improve a combined assessment of function and survival in people with amyotrophic lateral sclerosis (ALS), according to top-line data from the MERIDIAN Phase 2 clinical trial. While the treatment was well tolerated, consistent with its established safety profile,…
I don’t like asking for help, but when it’s for my husband, I’ll do it. Last Friday, after getting my kids out the door for school, they quickly returned to the house. “The car has a flat tire,” my daughter announced. “I’ll drive you,” I responded.
After an ALS diagnosis, some useful next steps include educating yourself, putting together your care and support team, weighing your financial options, and looking at the variety of resources available to you.
On June 3, the Greater Chicago Chapter of the ALS Association will host its 2023 Chicago Walk to Defeat ALS fundraiser, with an aim of supporting patients and families living with amyotrophic lateral sclerosis (ALS). The 1.5-mile event will again take place at Cantigny Park in…
Every once in a while, I have to stop and declare, “I’m spinning way too many plates!” That happens whenever I begin to feel overwhelmed by the number of tasks I’ve set myself up to do while living with ALS. You’ve seen plate spinning, right? It was…
Our first holiday since my tracheotomy. My wife ordered these shirts while I was in the ICU. Since then, these shirts have become a part of who we are. We now are selling them on our website. Love. (Photos courtesy of Brian Jeansonne) This is Brian Jeansonne’s story: I’m…
Allopurinol and carvedilol, two medications respectively used to manage gout and high blood pressure, significantly reduce the chances of developing amyotrophic lateral sclerosis (ALS), Alzheimer’s, or Parkinson’s disease, a new study suggests. “These findings suggest a possible new direction for repurposing or developing medications for neuroprotection,” Brad…
