Living with ALS has brought many changes, but we ‘keep on keepin’ on’

John Russell, his wife, Judy, left, and sister, Irene, in Vero Beach, Florida, in March 2020. (Photo courtesy of John Russel) This is John Russell’s story: I am one of the more fortunate people who have been diagnosed with ALS. I noticed difficulties with gait and balance in…

ATH-1105, a treatment candidate by Athira Pharma, significantly prolonged survival in a mouse model of amyotrophic lateral sclerosis (ALS), according to a company update. Consistent with previous analyses, the treatment also reduced neurodegeneration, inflammation, and the toxic buildup of the TDP-43 protein in nerve cells, which resulted…

The ALS Association and the Association for Frontotemporal Degeneration (AFTD) have opened a global grant program to accelerate the development of digital assessment tools for amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD), a related condition. The Digital Assessment Tools for FTD and ALS Awards, backed…

I love learning about all the great activities happening during ALS Awareness Month, but I also worry that we’re attracting the attention of unscrupulous health advocates and clinics who target vulnerable ALS patients and their families. My health-fraud antenna is on high alert. Spending 30 years managing the…

Photos courtesy of Sarah Nauser. This is Sarah Nauser’s story: My name is Sarah Nauser and I was diagnosed with ALS in May 2018, at age 29. I grew up a huge Kansas City Royals baseball fan. As a teenager, after softball practice, my best friend and I…

Cognixion’s flagship device Cognixion ONE Axon, a product designed to improve communication in people with severe motor impairments, has beed granted breakthrough device designation by the U.S. Food and Drug Administration (FDA). The wireless device is specifically designed for people with people with amyotrophic lateral sclerosis (ALS)…

MRI scans of the brains of people with amyotrophic lateral sclerosis (ALS) have identified a neurochemical called N-acetyl aspartate (NAA) whose levels correlate with the loss of motor function, a study reports. A drop in NAA levels was associated with the breakdown in communication between the primary motor cortex…

After receiving so many positive comments on my last column, I thought it would make sense to give you some real-time information on my respite care stay, which is how the issue of certified ALS caregivers — the topic of that column — arose. I am one…

May has always been my favorite month of the year. Here in Maryland, the trees have filled in with lush green leaves, commercial crabbing boats have begun to quietly travel my small creek in the early dawn hours, and mallard ducks have returned to my yard. The evenings stay lighter…

Tony Pripusich  and his daughter, Sabrina Johnson. (Photo courtesy of Sabrina Johnson) This is Sabrina Johnson’s story: As a little girl, I always envisioned life as a mom. I grew up babysitting, enjoyed caring for younger cousins at family parties, and felt as if looking out for others just…