Why I continue to volunteer and stay involved in ALS causes

Every May for the past five years, the nonprofit I AM ALS hosts a summit to raise ALS awareness, the hallmark of which is a display of 6,000 small blue flags planted on the National Mall in Washington, D.C. Each flag represents a person who is living with…

You don’t know what you don’t know. Sometimes I feel like we are flying blind. Maybe we are. Maybe because we live in a rural area and don’t have access to an ALS clinic, we are just figuring things out as we go. When my husband, Todd, was diagnosed…

Living in areas with a moderate amount of green space appears to reduce the likelihood of developing amyotrophic lateral sclerosis (ALS) — but both very low and very high levels of greenness may increase the odds for different reasons, according to a study from Italy. The findings “may have…

There is an association between traumatic head injuries and amyotrophic lateral sclerosis (ALS), but the nature of this relationship remains unclear, according to a review and meta-analysis of published studies. People who had a history of a traumatic head injury were nearly 50% more likely than those without head…

The longer I live with ALS, the more I’m forced to learn about myself by constantly adjusting to my body’s limitations and learning how to pace my days. Lately, I’ve been taking lessons in how to thrive from a large, graceful houseplant on our back porch. We are both,…

AC Immune’s experimental imaging agent ACI-19626 continues to show a good safety profile and has shown promise for detecting toxic TDP-43 protein clumps in people with amyotrophic lateral sclerosis (ALS). That’s according to new data from an ongoing Phase 1 clinical trial (NCT06891716), in which the PET…

I lost Mary Ann, my wife of 34 years, to ALS more than seven years ago. The last eight of those years with her were a medical odyssey. After developing neurologic symptoms in 2011, Mary Ann was diagnosed with Parkinson’s disease in February 2012. When other distinct…

The APOE4 gene variant, an established genetic risk factor for Alzheimer’s disease, may also influence how toxic TDP-43 protein clumps spread in people with amyotrophic lateral sclerosis (ALS), a study suggested. Researchers found that people with ALS who carried the variant were significantly more likely to show TDP-43…

As I prepared to shower my husband, Todd, who is paralyzed due to ALS, I asked his smart speaker to play “Hurt” by Johnny Cash, and after that finished, I asked it to play similar songs. As I shaved Todd’s head, a song I’d never heard before came…

Outsee has been selected for a Discovery Award from the Longitude Prize on ALS to support the use of the company’s artificial intelligence (AI)-based platform and large-scale patient genomic data to identify new therapeutic targets for amyotrophic lateral sclerosis (ALS). The Longitude Prize on ALS is a £7.5…