While my late husband, Jeff, was living with ALS, a close family member was diagnosed with colon cancer and required immediate surgery. Fortunately, the cancer had been caught early, and the surgery was successful in eliminating it without complications. The unexpected cancer diagnosis meant that we now had a…
Cooler-than-average temperatures these last few weeks are turning our maple trees red, reminding me that winter is just around the corner. Due to caring for my husband, Todd, who has ALS, I don’t often get out to see the best of Michigan’s Upper Peninsula — such as the shores…
Ionis Pharmaceuticals recently celebrated the 10th anniversary of its Surf Away+ program, a day of adaptive sports and beach fun that has welcomed people with amyotrophic lateral sclerosis (ALS) alongside those with other neurological diseases. Held Sept. 12 at the beach in Oceanside, California, the event brought together…
Come on, do we really need another reminder to practice self-care? I think we do. I know I need it, especially because I have ALS and am living in a world that’s barreling down a bumpy track. The type of self-care I’m currently focusing on isn’t a self-indulgent three-day vacation,…
In a new initiative, Mosaic Neuroscience is teaming up with Ixcells Biotechnologies to develop patient-specific cell models that could lay the foundation for advancing precision medicine in amyotrophic lateral sclerosis (ALS). The pilot project is the first to be launched as part of Project Mosaic, an effort —…
Long-read DNA sequencing is a more accurate method than short-read sequencing for detecting certain defects in genes associated with an increased risk of sporadic amyotrophic lateral sclerosis (ALS), a new study suggests. A relatively new technique, long-read sequencing can capture data on thousands to hundreds of thousands of nucleotides,…
The investigational antisense oligonucleotide (ASO) therapy BIIB078 may have failed in amyotrophic lateral sclerosis (ALS) clinical trials because it wasn’t adequately reversing key disease processes in the brain and spinal cord. Analyses of body fluids and tissue from participants showed that, while BIIB078 reached key tissues, it couldn’t entirely…
A friend who stopped by for a visit last weekend asked my husband, Todd, “Anything new?” “Not really,” he said. “So no more choking incidents?” she asked. “There have been choking incidents, and Kristin has to clear my lungs every couple days,” he replied, “but you asked if there was…
AP-101, AL-S Pharma’s amyotrophic lateral sclerosis (ALS) therapy, was safe and well tolerated and led to clinically meaningful benefits for breathing and survival after one year of treatment. That’s according to topline data from a now-complete Phase 2a study (NCT05039099) that tested the therapy in 73 adults with…
“I should be an ALS comedian. I know I could, too — that is, if it weren’t for my darn ALS.” That’s what I tell myself on the days when life’s funny moments come at me fast and furious. It’s another example of how this disease keeps on challenging…
