Jodi O’Donnell-Ames founded Hope Loves Company after losing her husband to ALS. (Courtesy of Jodi O’Donnell-Ames) This is Jodi O’Donnell-Ames’ story: The term amyotrophic lateral sclerosis (ALS) was not a part of my vocabulary until May 1995. That’s when my husband, Kevin O’Donnell, was diagnosed with…

Applications are open for the first year of the ALS Canada Kevin Daly Bursary, a grant program for post-secondary students whose lives have been touched by amyotrophic lateral sclerosis (ALS). A $2,500 bursary will be awarded to a Canadian student who’s been accepted into a college or university in…

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…

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…

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…

Cellenkos has dosed the first patient in the Phase 1/1b clinical trial that’s evaluating its regulatory T-cell-based therapy CK0803 for the treatment of amyotrophic lateral sclerosis (ALS). The patient will be one of six participants included in the Phase 1 run-in period of the REGALS clinical trial…