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…
Last week, I was in a grocery store and noticed another shopper had an occasional cough and wasn’t covering his mouth. I gave him wide berth as I gathered the items I needed. When I had found everything on my list, I made a beeline for the checkout line, and…
Health Canada has resumed its review of AB Science’s application seeking approval of masitinib, an oral add-on therapy for amyotrophic lateral sclerosis (ALS), after the agency halted its review late last year. In 2022, the agency agreed to review the application under the notice of compliance with…
Apellis Pharmaceuticals has discontinued treatment with pegcetacoplan (APL-2), its investigational therapy for amyotrophic lateral sclerosis (ALS), in the open-label stage of the MERIDIAN trial. The decision follows a review of trial data by an independent data monitoring committee, which concluded that the available results did not…
The Poling family. From left, Liam, Erika, Bayler, and Seth. (Photos courtesy of Seth Poling) This is Seth Poling’s story: Hello, my name is Seth Poling, and I’m a 36-year-old husband to my beautiful wife, Erika, and a father of two sons, Liam and Bayler. I live in Morgantown,…
Qalsody (tofersen) is an injection therapy conditionally approved in the U.S. for the treatment of amyotrophic lateral sclerosis (ALS) associated with mutations in the SOD1 gene (SOD1-ALS).
Every once in a while, a common question circulates on ALS social media sites: “What would you do differently if you were diagnosed today?” The replies are interesting and often filled with regrets, such as trips not taken or home modifications made too late. I’ve participated in these discussions…
