Trying to see beauty after 13 years with a diagnosis of ALS

As I fed my husband, Todd, his morning breakfast, a charm of yellow finches caught our attention, flitting to and from a mountain ash outside our dining room window. That old tree has brought many moments of joy that are sweet reprieve from the daily challenges of life with…

A final decision by the U.S. Food and Drug Administration (FDA) on whether or not to approve NurOwn for amyotrophic lateral sclerosis (ALS) is now expected no later than Dec. 8. But before that, on Sept. 27, an FDA advisory committee will meet to review the potential benefits…

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,…

Today marks the third annual Major League Baseball (MLB) Lou Gehrig Day, set aside to honor the legacy of the famed New York Yankees first baseman whose career was shortened by amyotrophic lateral sclerosis (ALS). For the first time since the event began, all 30 MLB teams have…

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.

A committee of the European Medicines Agency (EMA) is leaning toward not recommending a conditional approval of Amylyx Pharmaceuticals’ AMX0035 for treating amyotrophic lateral sclerosis (ALS) in the European Union. The drug is already marketed in the U.S. under the name Relyvrio (sodium phenylbutyrate and taurursodiol) and…

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…