Making Game Nights Work

Making Game Nights Work

It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any game that requires writing or moving is a challenge. That would include most games, but we can make some…

NurOwn Dosing Likely to Continue for ALS Patients in Its EAP

Amyotrophic lateral sclerosis (ALS) patients who completed the expanded access protocol (EAP) for NurOwn may soon be eligible for three additional doses of the cell-based therapy, BrainStorm Cell Therapeutics reported. EAPs, also known as compassionate use programs, are intended to make investigational therapies available outside of a clinical trial…

Target ALS, ADDF Team Up to Fund Biomarker Research

A new partnership between Target ALS and the Alzheimer’s Drug Discovery Foundation (ADDF) will help facilitate biomarker research in neurodegenerative diseases, including amyotrophic lateral sclerosis (ALS), Alzheimer’s disease, and frontotemporal dementia (FTD). Identifying and validating appropriate biomarkers can help clinicians diagnose these diseases earlier, reliably track…

We Must Rely on Our Resilience

Lately, living with ALS amid the continuing world health crisis has me dialing my resilience-meter up to “high.” Why? Both have limited treatments and no cure in sight, and convert our old “normal” lives into an ever-changing world of new normal. And both require resilience. Resilience is our ability to…

PRO-ACT Database Wins Healey Center Prize for Innovation in ALS

The largest collection of amyotrophic lateral sclerosis (ALS) clinical trial data, amassed to help researchers globally find better treatments and potentially a cure for the progressive neurological disorder, was awarded the $50,000 Healey Center International Prize for Innovation in ALS. The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT)…

Gaining Behind-the-Wheel Experience Navigating ALS

“How am I supposed to drive when I can’t see anything?” my nearly 16-year-old daughter asked. Sara and I were logging night-driving hours, which are required before she can take the second segment of driver’s education in January. She already has 12 hours behind the wheel, mostly during the day,…

Landmark ACT for ALS Act on President’s Desk

If signed by President Joe Biden, the bipartisan Accelerating Access to Critical Therapies (ACT) for ALS Act will fund crucial research into fast-progressing neurodegenerative disorders such as amyotrophic lateral sclerosis (ALS) and provide patients with early access to promising treatment candidates. The legislation (HR 3537), which has passed the…

Risk of ALS Increases Nearly Fourfold in NFL Players

Athletes who have played in the National Football League (NFL) are significantly more likely than the general population to develop amyotrophic lateral sclerosis (ALS), according to a new study. “These findings indicate that athletes who played in the NFL have a nearly 4 times greater rate of developing, and…