A few months after I learned I had ALS, I was invited to participate in a walkathon to help raise funds for the ALS Association. I’m sure my curt reply of “No, thank you” came as a shock to the person inviting me. At the time, I had…

A sizable portion of people with sporadic amyotrophic lateral sclerosis (ALS) carry a genetic mutation known to cause other neurological disorders, a new study shows. “This suggests shared risk factors among these diseases, shared mechanisms that cause nerves to die – and perhaps shared therapeutic strategies in the future,”…

A Phase 2b trial of PrimeC for people with amyotrophic lateral sclerosis (ALS) has completed patient enrollment, according to NeuroSense Therapeutics, the therapy’s developer. Called PARADIGM (NCT05357950), the study enrolled 69 adults diagnosed with ALS, ages 18-75, at sites in Israel, Italy, and Canada. The company…

I love inspirational quotes and sayings. Throughout my life, I’ve stumbled upon passages from books or snippets of speeches from public figures and recognized them as a helpful way for me to understand or think about a current challenge in life. In some cases, they’ve served as mantras — easy…

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…