Although it’s hard to find much to celebrate in 2020, this year happens to mark an important milestone for my husband and me. I’m celebrating achieving 10 years of living with ALS, and for my husband, 2020 marks a decade of his role as a caregiver — to me. I…
After working for months behind the scenes, the ALS Association is calling a strengthened Accelerating Access to Critical Therapies for ALS Act (ACT) a key step toward swifter development of new therapies. The revised bill (HR 8662/S. 4867) calls for $100 million over five years for amyotrophic…
A newly identified type of immune cell — a kind of immature neurophil or white blood cell — was found to be responsible for the regeneration and survival of eye and spinal cord nerve fibers that is known to be possible in mice with induced nerve injury,…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
Eli Lilly and Company has acquired Disarm Therapeutics and its emerging therapies designed to prevent axonal degeneration in neurodegenerative disorders, including amyotrophic lateral sclerosis (ALS), multiple sclerosis, and peripheral neuropathy. Disarm’s new class of disease-modifying treatments, called SARM1 inhibitors, target the central driver of axonal…
Last week, we had an early snowfall, even for Michigan’s Keweenaw Peninsula. Snow frosted the tips of trees and blanketed the grass, leaving small bits of green peeking through. I posted a picture on social media and wrote, “It’s beginning to look a lot like Christmas. Gearing up for…
Bristol Myers Squibb has entered a five-year research collaboration with the machine learning startup insitro to discover and develop new therapies for amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). Machine learning is a form of artificial intelligence that uses algorithms to analyze large amounts of data, learn…
“The world is covered by our trails / Scars we cover up with paint / Watch them preach in sour lies / I would rather see this world through the eyes of a child.” Those lyrics…
Toxic clumps due to the buildup of the TDP-43 protein can trigger the neuronal inflammation that precedes symptoms of amyotrophic lateral sclerosis (ALS) by activating an inflammatory signaling pathway called cGAS-STING, a study reported. Its findings suggest that targeting this inflammatory signaling may be an effective way of treating ALS.
I love being in win-win situations. We all do. Especially while world events continue to push the boundaries of our patience. And my latest project offers me many wins: It’s the perfect addition to my current home voice program, and I’m helping to research ALS voice issues. Like 80%…
