Figuring out how to manage each stage of ALS for my husband, Todd, is a challenge. Each time Todd experiences another loss, I scramble to find answers and resources. Our latest challenge was trying to get proper support for Todd’s Astral noninvasive ventilator. It doesn’t help that we…
“And you know that you’re over the hill, When your mind makes a promise that your body can’t fill.” This refrain from the Little Feat song “Old Folks Boogie” could have been written with ALS sufferers in mind. It partly portrays our truncated existence. It humorously depicts making the…
The ALS Association has formally objected to the use of two controversial measures of cost-effectiveness in the upcoming evaluations of AMX0035 and oral edaravone, which are being reviewed as treatments for amyotrophic lateral sclerosis (ALS) in the U.S. These cost-effectiveness measures fail to value the lives of ALS…
This month, I have a few ALS-related activities scheduled that in the past could have easily left me feeling exhausted. But now that I’m following my own advice, I know my recovery plan will let me sail through the month with ease. I’ve often discussed the ALS symptoms of…
A two-year project aims to identify reliable blood tests for measuring neurofilament protein levels, which could aid in the early detection of frontotemporal degeneration (FTD) and amyotrophic lateral sclerosis (ALS), and possibly other rare neurodegenerative disorders. Neurofilament, a protein component of neurons, is released when these nerve cells are…
The Phase 2/3 clinical trial testing UCB’s investigational therapy zilucoplan for amyotrophic lateral sclerosis (ALS) — one of the arms of the multi-regimen HEALEY ALS platform trial — has been stopped early based on interim data. The decision was made after a pre-specified analysis “demonstrated futility,” UCB said…
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
Minnesota lawmaker Dave Lislegard has introduced two measures in the state’s legislature that would invest tens of millions of dollars in amyotrophic lateral sclerosis (ALS) research and caregiver support. The first bill, HF 3603, would appropriate $20 million to the University of Minnesota for competitive research grants to…
Note: This story was updated April 4, 2022, to clarify that 700 participants, including both ALS patients and healthy volunteers, have been recruited to the study. Mitsubishi Tanabe Pharma America (MTHA) has joined EverythingALS’s consortium to accelerate the development of new digital biomarkers for amyotrophic lateral…
ALS has compromised the breathing of my husband, Todd, to the point where his positioning — unless he is using the Astral noninvasive ventilator — can mean the difference between being able to breathe or not. We only realized how bad it was a couple of weeks ago when we…
