Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves for a family outing on my 33rd birthday. We planned the day around our baby’s nap schedule. With only one weak arm, my husband, Todd, drove me, our 4-year-old daughter, and 11-month-old son to the…
Train Your Eyes to Find the Light
The first platform trial for amyotrophic lateral sclerosis (ALS), designed to assess multiple treatment candidates simultaneously with a goal of accelerating the development of ALS therapies, has enrolled its first patients. The HEALEY ALS Platform Trial (NCT04297683) will start by evaluating UCB’s…
“The world will little note, nor long remember …” These words of Abraham Lincoln were his prediction that the speech containing them would have no permanence. Ironically, the Gettysburg Address would become one of most enduring elements of Lincoln’s legacy.
Kadimastem’s cell therapy candidate, AstroRx, significantly lowers the rate of disease progression in people with amyotrophic lateral sclerosis (ALS) for at least three months after treatment, updated findings from the company’s Phase 1/2 clinical trial show. The company already had reported promising…
Taming My Runaway Thinking
Racing thoughts, runaway thoughts. Whatever you call ’em, I caught ’em. Yup, a case of full-blown, out-of-control, runaway thoughts. I hadn’t had them for years — not since the day I was told I had ALS. And then, like most newly diagnosed patients, I spent weeks and months imagining the…
The clear, colorless liquid that fills and surrounds the brain and spinal cord in people with amyotrophic lateral sclerosis (ALS) seems to induce early neurodegeneration events in healthy motor neurons, a study has found. When motor neurons were continuously cultured with cerebrospinal fluid from ALS patients, cells showed…
Stem cells collected from a patient’s bone marrow and infused into the spinal fluid safely improved speaking abilities after 28 days for most of the 12 adults with amyotrophic lateral sclerosis (ALS) evaluated in a small study. Its researchers recommend further…
The gut microbiome in people with amyotrophic lateral sclerosis (ALS) is altered compared to healthy people, which includes an imbalance in potentially protective microbial groups and others with pro-inflammatory activity, a study found. Also, while taking probiotic supplements over six months…
Snapshots of Life With ALS
“Thank God I didn’t have to cough this weekend,” my husband, Todd, said after his parents left. They had been visiting us from Minnesota. A couple months ago, his mom called as I was returning from the grocery store. “Todd can’t breathe. He needs help,” she said. He was doing…
Orion Corporation’s oral therapy levosimendan (ODM-109) failed to preserve lung function and overall functionality in people with amyotrophic lateral sclerosis (ALS), data from the Phase 3 REFALS clinical trial show. “We would like to express our warmest thanks to the patients, carers and investigators for participating in the REFALS…
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