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A story of shoe shopping and resilience in adapting to ALS
I know I’ve said this many times, but it’s worth repeating: One of the most important lessons ALS has taught me is to never give up. This leads me into this week’s column. It’s a story about shoes and my pursuit of the perfect pair. Spoiler alert: There’s a…
New analysis shows Radicava ORS slows ALS decline
A retrospective analysis using data from two clinical studies and their extension periods showed that Radicava ORS, an oral formulation of edaravone, slows functional decline and helps adults with amyotrophic lateral sclerosis (ALS) live longer. “This analysis provides additional data to help characterize functional outcomes and potential impact of…
Repurposed vet drug helps ALS patients live longer: Study
A veterinary medication repurposed as a treatment for amyotrophic lateral sclerosis (ALS) helped patients live longer and slowed disease progression in a long-term clinical trial. The drug, NUZ-001 from Neurizon Therapeutics, was generally safe and well tolerated in the open-label extension (NCT06177431) study, which tested the treatment in…
ALS gene therapy prepares to move to clinical trials in China, US
China’s National Medical Products Administration has granted Sineugene Therapeutics permission to begin clinical trials of its gene therapy SNUG01 in people with amyotrophic lateral sclerosis (ALS), clearing the way for clinical trials. The announcement follows a similar decision by the U.S. Food and Drug Administration (FDA). It sets…
This year’s ALS Nexus conference celebrated progress, shared hope
The second edition of ALS Nexus — a conference hosted earlier this month in Dallas by the ALS Association — brought together people from across the amyotrophic lateral sclerosis (ALS) community to connect with each other, celebrate recent advances, and share hope for the future. “What really…
Lack of resources at FDA extends clinical hold on ALS drug NUZ-001
Due to a lack of resources and personnel, the U.S. Food and Drug Administration (FDA) has delayed its decision on whether or not to lift the clinical hold on NUZ-001, Neurizon Therapeutics’ investigational therapy for amyotrophic lateral sclerosis (ALS), the developer announced. A decision from the regulatory agency…
An unwelcome visitor adds unnecessary stress to our ALS life
I was on schedule Monday morning to get out the door by 11:45 until I had an unwelcome visitor. I had a noon appointment for something that would be difficult to reschedule, so I got my husband, Todd, out of bed early. I parked his power wheelchair at his counter-height…
Healthy volunteer study’s results net clinical trial for ALS therapy
An experimental oral therapy for amyotrophic lateral sclerosis (ALS) that’s being developed by Athira Pharma was shown to be safe and well tolerated in healthy volunteers who took part in a Phase 1 clinical trial, and the treatment entered the participants’ brain and spinal cords at dose-proportional levels.