Practicing radical acceptance is difficult for me in life with ALS

In a recent episode of the “Hidden Brain” podcast, behavioral scientist Dave Evans discussed radical acceptance. He described his 69-year-old wife, Claudia, receiving a terminal cancer diagnosis and how they chose to skip the denial, anger, and depression that often come with grief. They moved straight to acceptance, allowing…

When my father, Mickey, was diagnosed with amyotrophic lateral sclerosis (ALS), I was a sophomore in high school. Our world changed overnight. Like so many families, we were suddenly navigating a disease we barely understood — one that moves quickly and gives you very little time to adjust. We…

Dutch Bros is holding its annual Drink One for Dane Day of Giving fundraiser this Friday, May 15, with the Dutch Bros Foundation and franchisees donating $1 from every drink sold to support the fight against amyotrophic lateral sclerosis (ALS). The event raises funds and awareness of…

I spent five days last week corresponding with a fellow ALS patient in the U.K. We met during a unique online event that reminded me that, while this disease can feel isolating, the ALS community wraps all the way around the globe. Beyond the connection, I walked away with…

COYA 302, Coya Therapeutics’ investigational therapy for amyotrophic lateral sclerosis (ALS) — shown in an early clinical trial to slow disease progression in a small number of patients —  has been awarded fast track status by the U.S. Food and Drug Administration (FDA). That designation is intended to…

The ALS Association has awarded $3 million to help expand access to specialized amyotrophic lateral sclerosis (ALS) care in underserved and geographically isolated communities across the U.S. The funding comes from the organization’s Hoffman ALS Clinic Development and Capacity Awards programs, established through a historic $58 million…

A cellular recycling system that degrades damaged or unwanted proteins is impaired in motor neurons from people with amyotrophic lateral sclerosis (ALS), suggesting it could be a target for future therapies aimed at slowing disease progression, according to a new study. The research also showed that motor neurons in…

EverythingALS has launched a new online tool called SAVA AI that uses artificial intelligence to instantly match people with amyotrophic lateral sclerosis (ALS) to clinical trials. The platform is available for free through the EverythingALS website or as a mobile app, providing patients with a secure way…

Getting out of the house is always a challenge because my husband, Todd, has ALS and needs care almost 24/7. I never know if I’ll make it to my Monday night ukulele group. When I do, I’m usually rushing to feed Todd, help him in the bathroom, and get…

The U.S. Food and Drug Administration (FDA) has granted fast-track designation to tazbentetol, an experimental oral therapy being developed by Spinogenix for amyotrophic lateral sclerosis (ALS). Fast-track status is intended to speed the development and review of treatments for serious conditions with unmet medical needs. It will allow Spinogenix…