The phrase “stay in your lane” is often posted on signs to help motorists drive through a construction zone. It’s also a basic rule when swimming side by side in a race with other competitors. In my life with ALS, I use one of the other meanings of the…
How I stay in my lane when writing about ALS
Cognixion is recruiting adults with amyotrophic lateral sclerosis (ALS) for a clinical trial testing ONE Axon-R, a wearable headset that combines augmented reality and brain-computer interface technology with an artificial intelligence (AI) application to facilitate communication. Launched early this year at a single site in the U.S., the…
The ALS Society of Canada (ALS Canada) has named 39 Canadians to be presented the King Charles III Coronation Medal for their efforts into research and advocacy for amyotrophic lateral sclerosis (ALS). The Coronation Medal program, launched in 2023 to mark the coronation of His Majesty King…
Using a smartphone app to self-assess ALS Functional Rating Scale-Revised (ALSFRS-R) scores, a standardized measure of amyotrophic lateral sclerosis (ALS) severity, may be as reliable as clinic-based assessments, a study reports. Its findings suggest this app could be a useful digital tool for remote monitoring of ALS, allowing patients…
When I was growing up, many of my neighbors participated in the U.S. Naval Academy Sponsor Program, as we lived just a few miles from the school’s campus in Annapolis, Maryland. Under the program, local families “adopted” midshipmen, offering a home away from home to the students, who could come…
Treatment with CNM-Au8 in the HEALEY ALS platform trial prolonged survival for people with amyotrophic lateral sclerosis (ALS) relative to those who received the investigational treatment zilucoplan or a placebo in a separate arm of the study, according to new analyses. The benefits were most pronounced in the…
“I can’t believe I could’ve had longer footrests this whole time,” my husband, Todd, said this morning as he peered down on his wheelchair while I transferred him using our overhead lift. “I’ve been so nervous about my toes, especially now that I’m having such a hard time driving.” Todd…
Denali Therapeutics‘ oral candidate DNL343 has failed to reduce levels of an established biomarker of nerve cell damage in adults with amyotrophic lateral sclerosis (ALS). That’s according to new data from the DNL343 arm of the HEALEY ALS platform trial (NCT04297683), where patients who received the experimental…
I’ve been living with ALS for the past 15 years, and although it’s filled my days with life lessons and moments of gratitude, there have also been many twists of irony. One of the biggest ironies? I sometimes feel out of place in a community that’s so warm and…
A bipartisan team of lawmakers in the U.S. House of Representatives and Senate is pushing for legislation to help ensure that spouses of veterans who die from amyotrophic lateral sclerosis (ALS) have access to benefits. The Justice for ALS Veterans Act was introduced in the House by Brian Fitzpatrick,…
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