One of the interesting mental challenges I continue to experience as I live with ALS is its effect on my perception of time. The predicted prognosis of living only two to five years after symptom onset is a shadow that hangs over every ALS patient. Even though I’ve broken that…
What time well spent looks like in life with ALS
Oral small molecule TPN-101 has been selected for testing in amyotrophic lateral sclerosis (ALS) as part of the HEALEY ALS platform trial. The decision to include TPN-101 in the platform trial (NCT04297683) was based on the treatment’s unique mechanism of action and final data from a Phase 2 clinical…
My late husband, Jeff, and I shared a love of the outdoors, even though our preferred activities were often different. I loved to hike and kayak, while Jeff, who’d been injured when a car hit his bicycle in 2010 and still suffered from orthopedic pain, preferred to relax. Whether at…
Antidepressants that suppress the rapid eye movement (REM) stage of sleep are associated with prolonged survival in people with amyotrophic lateral sclerosis (ALS), according to recent research. Because most muscles are paralyzed during REM, this could increase the risk of breathing issues, including possible respiratory failure, in people with…
We had a whirlwind of activity this past Memorial Day weekend, with friends visiting from out of town. We had blue skies, sunshine, and warmer temperatures than usual. After a long winter and the slow unfolding of spring here in Michigan’s Keweenaw Peninsula, it felt like a gift.
Supporters will celebrate the 5th annual Lou Gehrig Day on June 2. The yearly event honors the legacy of the Major League Baseball (MLB) Hall of Famer whose high-profile struggle with amyotrophic lateral sclerosis (ALS) brought widespread attention to the rare neurodegenerative disease. Through awareness and fundraising initiatives,…
A study found that genetic mutations associated with amyotrophic lateral sclerosis (ALS) lead to problems with the function and transport of mitochondria, cellular structures needed for energy production, early in the disease course, before abnormal protein clumps are formed. “We show that the nerve cells, termed motor neurons, that…
The ALS Network will support a collaborative research effort, at California’s Lawrence Livermore National Laboratory, that will use electronic health records (EHRs) to identify existing medications that could slow the progression of amyotrophic lateral sclerosis (ALS). The $300,000 project is aimed at drug repurposing — finding medications already…
The U.S. Food and Drug Administration (FDA) has cleared a Phase 3b clinical trial to test Brainstorm Cell Therapeutics’ cell-based therapy NurOwn (debamestrocel) in people with amyotrophic lateral sclerosis (ALS). The trial, ENDURANCE (NCT06973629), is expected to open soon at more than a dozen sites across…
My husband, Todd, hasn’t left our home since a dentist appointment last fall, and he hasn’t been to the park or attended an event in years. He doesn’t want to go out — his ALS progression has made being anywhere outside the house too uncomfortable to enjoy. He’s most…
Recent Posts
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- New ALS treatment improves survival, leads to function gains in trial
- ALS Network, ALS United calling for ‘bold’ research proposals for funding
- Study finds common medications that could be repurposed to treat ALS
- New eye imaging approach may help distinguish ALS from Alzheimer’s