Last week I hit a milestone of sorts: my 35th ALS clinic visit. That’s not to say that medical appointments deserve the same recognition as birthdays or graduations, to be memorialized in a scrapbook. But because ALS has been a dominant part of my life for the past…

When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the…

A conference in July will feature “diverse perspectives,” including patient presentations and discussions featuring people living with amyotrophic lateral sclerosis (ALS) along with clinical and research experts. That’s according to the ALS Association, which said its inaugural ALS Nexus Conference will be held July 14-17 at the Gaylord Texan Resort &…

A biomarker test that identifies abnormal protein fragments called cryptic peptides may help detect amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) in the early stages, a study found. Cryptic peptides from the HDGFL2 protein were elevated in fluid samples from people with ALS/FTD, including in those who had…

The ALS Association is partnering with MyTomorrows, a global health technology company, to make it easier for people with amyotrophic lateral sclerosis (ALS) to find and participate in clinical trials, and to know about “pre-approval treatment options,” the company said in a press release. The collaboration…

Health Canada is now reviewing Qalsody (tofersen) as a potential treatment for people with amyotrophic lateral sclerosis (ALS) who carry mutations in the SOD1 gene, according to the therapy’s developer Biogen. The Canadian regulatory authority agreed to review Biogen’s application for the therapy’s approval, with its decision expected in early 2025, according to…

EverythingALS has introduced a platform aimed at advancing amyotrophic lateral sclerosis (ALS) research using artificial intelligence (AI) and machine learning — with the ultimate goal of eradicating the disease and restoring lost motor function to those with ALS and other neurodegenerative disorders. The collaborative and technology-enabled platform, dubbed…

While living with ALS, I have days when I’m low in spirit and need something to lift me out of the doldrums. When this happens, two things help me: a visit from my daughter and some great music. Recently, I got both at the same time. What a…

“I’ve noticed a decline in my mental health this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but…

ALS challenges our sense of self and ability to accept change. However, the triggers that motivate us toward acceptance can be different for each patient. Recently, on the ALS News Today Forums, we’ve been having a lively response to the question, “What is the most difficult thing for…