On a bitterly cold morning in New York last weekend, I woke before the sun and walked through the empty city streets to the Times Square subway station. From there, I caught a train to Brooklyn, the starting line for the United Airlines NYC Half, where more than…
Running on faith: How embracing a challenge gave me perspective
Changes in neurofilament light chain (NfL) levels — a biomarker of nerve cell damage — were deemed by an advisory committee reasonably likely to predict clinical efficacy from tofersen in people with amyotrophic lateral sclerosis (ALS) caused by SOD1 gene mutations. The unanimous vote from the Peripheral and Central Nervous…
My husband’s nose wouldn’t quit bleeding this past Sunday morning, preventing him from using his noninvasive ventilator. Todd is paralyzed from ALS, so he sat in his power wheelchair in front of the bathroom sink as I went to work. I packed his nostril with wadded up…
A potential new genetic risk factor for amyotrophic lateral sclerosis (ALS) has been discovered by researchers at the University of Washington. The scientists say a mutation in which a region of the WDR7 gene is repeated more times than usual may increase the risk of ALS. “We believe that…
Four people with amyotrophic lateral sclerosis (ALS) each experienced a marked slowing in disease progression with COYA 302, an experimental immune-modulating therapy tested in a small proof-of-concept clinical trial, according to Coya Therapeutics, its developer. Based on these findings, Coya is planning to start work on further trials to…
ALS has taught me many life lessons, and a very important one is to never give up. For example, some days I get up, get going, and suddenly notice that one of my body parts isn’t moving as well as the day before. It’s a small, quirky thing, like…
Amyotrophic lateral sclerosis (ALS) patients treated with Radicava (edaravone) tend to go longer before reaching disease milestones such as needing a walking aid or breathing support, according to an analysis of insurance data. The findings were presented at the Muscular Dystrophy Association (MDA) Clinical and Scientific Conference in…
Amylyx Pharmaceuticals is facing a new hurdle — a second round of questions from a European Medicines Agency (EMA) committee — in its quest to have AMX0035 approved as a treatment for amyotrophic lateral sclerosis (ALS) in Europe. The questions, from the Committee for Medicinal Products for…
On a snowy morning three years ago, in Ann Arbor, Michigan, my late husband, Jeff, sped the entire length of the University of Michigan football field in his blue power wheelchair. Light snow was falling as his brothers and I watched him fly down the field, a…
Anew Medical‘s targeted gene therapy candidate, ANEW-202, eased multiple mechanisms associated with amyotrophic lateral sclerosis (ALS), leading to improved muscle function and survival in a mouse model of the disease. The gene therapy, licensed on an exclusive worldwide basis from the Autonomous University of Barcelona, in Spain, is…
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