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…

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)…

“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,…

Amydis announced plans to launch a first clinical trial next year into the ability of its small molecule tracer to detect toxic TDP-43 clumps — a hallmark of amyotrophic lateral sclerosis (ALS) — in the eye’s retina. Its announcement follows a preliminary meeting with U.S. Food and Drug Administration…

“Catch a Cannonball, now, to take me down the line My bag is sinkin’ low and I do believe it’s time To get back to Miss Fanny, you know she’s the only one Who sent me here with her regards for everyone Take a load off Fanny Take a load…

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…

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…

Amyotrophic lateral sclerosis (ALS) leads to neuron damage in an eye layer called the retina through the activation of pro-inflammatory microglia, or immune cells of the brain and spinal cord, a study in a mouse model of the disease suggests. Consistent with previous evidence of retinal damage in…

A significantly greater proportion of amyotrophic lateral sclerosis (ALS) patients with less severe disease showed slower ALS progression with the investigational cell-based therapy NurOwn relative to a placebo. These are the findings of another post-hoc analysis of data from NurOwn’s Phase 3 clinical trial (NCT03280056), further supporting the…

We decorated for Christmas this past weekend. The kids and I went out into the woods, and my 12-year-old son, Isaac, cut down a balsam fir. My 15-year-old daughter, Sara, carried it back to our house, and we put it in the tree stand in the living room. When we…