The summer and autumn of 2018 brought uncertain and scary moments for my late husband, Jeff, and me as he battled progressing symptoms of what would later be diagnosed as ALS. His symptoms had begun with the seemingly benign experience of foot drop, which was frustrating but not painful.
My husband, Todd, was diagnosed with ALS in June 2010. That winter, Todd and I, along with our 4-year-old daughter and 1-year-old son, visited my parents in Michigan’s Upper Peninsula. My dad had plowed snow into high banks, and on one large pile next to the house, he had…
People with amyotrophic lateral sclerosis (ALS) who get a feeding tube placed after losing a lot of weight are more likely to die within a few months than those who receive feeding support before major weight loss, a study reports. Findings suggest that feeding tubes placed before substantial weight…
Due to substantial increases in the use of healthcare resources, medical costs in the U.S. for people with amyotrophic lateral sclerosis (ALS) rise significantly as the disease progresses, going from about $31,000 per year in the early disease stage to $122,000 per year in the late stage, a study…
The HEALEY ALS platform trial, which is simultaneously testing multiple potential treatments for amyotrophic lateral sclerosis (ALS), is amending its master protocol to allow a longer follow-up time and collection of blood cells for use in future research. Slight modifications to the enrollment criteria and visit schedule will…
In the field next to our home, a stand of more than 100 Fraser firs provide boughs for my wreath-making operation. It’s a good seasonal gig for me because it’s flexible. Since I take care of my husband, Todd, who is paralyzed due to ALS, I can’t work outside…
Neurosense Therapeutics is working on finishing touches for the protocol of a Phase 3 study testing PrimeC, an oral treatment the company is developing for amyotrophic lateral sclerosis (ALS), and plans to submit the protocol for approval to the U.S. Food and Drug Administration (FDA) in the first…
The Centers for Medicare and Medicaid Services (CMS) has issued a directive requiring that Medicare Advantage plans cover Qalsody (tofersen) to treat people with amyotrophic lateral sclerosis (ALS) caused by mutations in the SOD1 gene. The directive comes after the ALS Association worked closely with…
Dazucorilant, an oral cortisol modulator being developed by Corcept Therapeutics, didn’t significantly slow disease progression in people with amyotrophic lateral sclerosis (ALS) over a placebo, meaning it failed to meet the primary goal of the DAZALS Phase 2 clinical trial. The study (NCT05407324), which tested dazucorilant doses…
Bravyl (oral fasudil), an experimental therapy Woolsey Pharmaceuticals is developing for amyotrophic lateral sclerosis (ALS), significantly reduced the spread of toxic TDP-43 protein clumps in a cell model of the disease. New data was presented at the University of Denver during the International Symposium on ALS/MND, which took…
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