Finding the Words to Describe Our Relationship With ALS

Finding the Words to Describe Our Relationship With ALS

I was struck by the wording in an advertisement in Quest magazine, a publication of the Muscular Dystrophy Association, that invited people “coping with amyotrophic lateral sclerosis (ALS)” to participate in an observational study. I think of “coping” as not only dealing with something difficult, but doing so…

The Unexpected Joy Emanating From Detective-watching

“Cellophane shrink-wrapped, so correct Red dogs under illegal legs … She is watching the detectives ‘Ooh, it’s so cute.'” Elvis Costello’s homage to film noir crime drama, “Watching the Detectives,” inadvertently became a musical tipping point as 2021 bled into 2022. On Dec. 30, my pastor — and dear…

Lief Care and AxeALS Partner to Support Patients’ Nutritional Needs

A Lief Cares initiative, under its partnership with AxeALS, raised nearly $8,000 for the amyotrophic lateral sclerosis (ALS) community and is providing patients with specially formulated nutritional supplements. Lief Cares is the nonprofit donation program of the California-based formulation and product developer and dietary supplement manufacturer Lief Labs. Through…

Pridopidine Arm of HEALEY ALS Platform Trial Fully Enrolled

Prilenia Therapeutics announced the completion of patient enrollment in the pridopidine arm of the HEALEY ALS platform trial, the first study to simultaneously test multiple experimental therapies for amyotrophic lateral sclerosis (ALS). Prilenia’s oral therapy pridopidine was selected as the trial’s fourth regimen (NCT04615923), with…

Things Can Change Quickly With ALS

On New Year’s Eve, I took our kids and their friends bowling. My husband, Todd, who has ALS and is paralyzed, stayed home and used his computer. As we arrived at the bowling alley, I received a text from Todd saying that he needed my help with his…