Life with ALS is hard whether it’s a sprint or a marathon

My son joined middle school track this year, and after a few days of practice, my husband, Todd, asked how it was going. “I’m not a long-distance runner,” he said. “I don’t know how to pace myself.” “I was no good for any distance, either,” Todd said. “I ran…

Target ALS has reached its capital campaign goal of $250 million to accelerate research and fuel scientific breakthroughs in amyotrophic lateral sclerosis (ALS). The campaign was spearheaded by founder Dan Doctoroff, a former deputy New York City mayor who was diagnosed with ALS in late 2021. He was…

Scientists at Broken String Biosciences and the Francis Crick Institute are teaming up to study how genomic instability, or an increased tendency to DNA mutations, contributes to amyotrophic lateral sclerosis (ALS). The findings may shed light on the mechanisms leading to sporadic cases of ALS, the term…

Patient enrollment is now complete in an arm of the HEALEY ALS platform trial that’s testing Denali Therapeutics‘ DNL343 for the treatment of adults with amyotrophic lateral sclerosis (ALS). The HEALEY platform trial (NCT04297683), led by the Sean M. Healey & AMG Center…

Epigenetic changes — chemical modifications in DNA that alter gene activity — in nerve cells from people with amyotrophic lateral sclerosis (ALS) may be associated with the rate of disease progression, a study suggested. Changes in certain regions of a patient’s nerve cell genome were able “to predict ALS…

Like many others, I completed the Ice Bucket Challenge when it became a cultural phenomenon in 2014. Created by Anthony Senerchia, Pat Quinn, and Pete Frates, who were living with ALS and have since died from the disease, the challenge involved being doused with a…

Alejandra Zeballos, a PhD student in bioengineering at the University of Illinois Urbana-Champaign, was awarded the 2024 Illinois Innovation Award for her work on next-generation therapies to advance the treatment of amyotrophic lateral sclerosis (ALS). Zeballos, a member of the Gaj Lab, has been working…

PrimeC, a treatment candidate for amyotrophic lateral sclerosis (ALS), was found to significantly slow disease progression in certain subgroups of patients in the ongoing PARADIGM Phase 2b trial, according to new data announced by its developer NeuroSense Therapeutics. Benefitting most were people at high risk of rapid disease…

As a caregiver for my husband, Todd, who has ALS, I’ve experienced numerous traumas in the 14 years that we’ve been living with the disease. Our lives were shattered with Todd’s diagnosis, which occurred when our daughter was 4 and our son was 9 months old. I…

University of Michigan neurologist Eva Feldman was recently recognized with the 2024 Sheila Essey Award for her groundbreaking research on the biological processes that drive the onset of amyotrophic lateral sclerosis (ALS) and its progression. The award, announced at the American Academy of Neurology (AAN) 2024 Annual Meeting, recognizes…