Life’s curveballs happen to us all. Many of my column’s topics have been about the unexpected events I face while I live with ALS, as well as what I do to conquer them. But I believe the secret to my ability to handle life’s ups and downs is…
6 simple habits that help me with living with ALS
Differences in tear metabolites — the products of metabolism that are found in human tears — in people with amyotrophic lateral sclerosis (ALS) were able to distinguish bulbar-onset disease, in which symptoms initially affect the face and throat, from spinal-onset ALS, where the first symptoms usually are weakness in…
Researchers detected changes in the production of several immune signaling proteins, called cytokines, in the cerebrospinal fluid (CSF) — the liquid that surrounds the brain and spinal cord — of people with amyotrophic lateral sclerosis (ALS) at diagnosis. These changes also correlated with certain clinical characteristics, and how quickly the…
This morning, while my husband, Todd, was sleeping in the next room, I read a few chapters of Brian Jeansonne’s new memoir, “Onward Forward — My Journey with ALS,” in which he examines with vulnerability and insight his life with the disease. In Chapter 11, Jeansonne, a spiritual…
Modality.AI is teaming up with Target ALS on a clinical study of artificial intelligence (AI) as way to assess changes in speech and motor function in people with amyotrophic lateral sclerosis (ALS). The trial will harness a virtual, conversational AI system, called Tina, intended to detect even…
Neurosense Therapeutics announced that it has received a U.S. patent covering the formulation of PrimeC, its lead investigational therapy for people with amyotrophic lateral sclerosis (ALS) that combines two approved medications in a fixed dose. The patent, “Compositions comprising Ciprofloxacin and Celecoxib,” was issued by…
“What was I thinking?” The words boomeranged around my mind as I stood frozen in place under the hot Arizona sun. I was experiencing an ALS patient’s worst nightmare: being stuck with an expanse of sidewalk ahead of me, the same distance behind me, and absolutely zero energy in…
ProJenX has teamed up with Unlearn, a company that specializes in artificial intelligence (AI), to create virtual twins of patients as a way of more quickly collecting data in a Phase 1 clinical trial of prosetin, its oral treatment candidate for amyotrophic lateral sclerosis (ALS).
A $22 million federal grant to the Mayo Clinic in Florida will fund a study providing access to the investigational therapy ibudilast (MN-166) for people with amyotrophic lateral sclerosis (ALS) across the U.S. The award, by the National Institute of Neurological Disorders and Stroke (NINDS), will support a…
When I reflect on my time as a caregiver to my late husband, Jeff, while we lived with his ALS, I remember how afraid I often felt. I was fearful of injuring him during a transfer. I dreaded making a mistake with his feeding tube. I worried about his…
Recent Posts
- New funding backs commercial readiness efforts for ALS therapy
- US lawmakers reintroduce bill to improve access to treatment for ALS
- An emotional dance performance mirrored my life with ALS
- Expanded access program for ALS drug MN-166 at 50% enrollment
- US clinical trials lack diverse representation of ALS patients