“All the Bush League batters Are left to die on the diamond In the stands the home crowd scatters For the turnstiles.” Twice in my post-ALS life, Neil Young’s song “For the Turnstiles” has struck me smack dab in the center of my forehead. As the dust finally settled…
Amylyx Pharmaceuticals‘ global Phase 3 clinical trial investigating AMX0035 as an oral treatment for amyotrophic lateral sclerosis (ALS) has begun dosing participants. The PHOENIX trial (NCT05021536) is expected to include 600 participants whose symptoms began in the past two years, which is a less-stringent criteria than was required for…
When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver. For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower…
“How are things going?” a friend asked. I explained that I have been concerned about my husband Todd’s breathing. He’s been waking up with headaches, which could be a sign that his breathing strength has declined due to ALS. He might benefit from noninvasive ventilation, but doesn’t want…
The United to End MND campaign in the United Kingdom is “disappointed” the nation’s government did not accept its plea to invest £50 million (about $68 million) in targeted motor neuron disease (MND) research. MNDs are a group of progressive neurological disorders that includes amyotrophic lateral sclerosis, commonly…
“Well I don’t know why I came here tonight, I’ve got the feeling that something ain’t right. I’m so scared in case I fall off my chair, And I’m wondering how I’ll get down the stairs. Clowns to the left of me! Jokers to the right! Here I am stuck…
Amylyx Pharmaceuticals is seeking approval in the U.S. for AMX0035, its investigational therapy for slowing functional decline in people with amyotrophic lateral sclerosis (ALS). The company submitted a new drug application (NDA) to the U.S. Food and Drug Administration (FDA) for regulatory review. The decision had been…
A molecule that blocks the regulatory RNA protein HuR, called SRI-42127, strongly reduces brain inflammation driven by activated glial cells, key players in neurodegenerative diseases like amyotrophic lateral sclerosis, a preclinical study reported. This inhibitor may be of promise in treating ALS and other diseases driven by inflammation in the brain. “Our…
Numotion has partnered with Team Gleason — the nonprofit started by former pro football player Steve Gleason after his 2011 amyotrophic lateral sclerosis (ALS) diagnosis — to improve access to advanced equipment and technology for ALS patients and their families. The partners also will focus on developing mobility and…
“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so…
