The estimated 2017 U.S. prevalence of individuals with amyotrophic lateral sclerosis (ALS) was 24,821, or 7.7 per 100,000 people, according to a recent report from the National ALS Registry. While a statistical model was used to account for potentially missing data, the research team emphasized that this number is…

My week has been full of projects, online responsibilities, physical activities, minicelebrations, and, oh yes, living with ALS. And while we ALS patients often complain that having our disease is a 24/7 challenge with no days off, I’ve found a way to give myself a mental break and enjoy…

Team Gleason and Synchron have entered into a partnership aiming to advance a technology that offers greater accessibility for people with amyotrophic lateral sclerosis (ALS) and other conditions that affect physical movement. Synchron is developing brain computer interfaces, or BCIs — devices that can detect activity in…

Silence ALS, a new initiative supported by Target ALS, set as its goals discovering and developing personalized antisense oligonucleotide (ASO) treatments for amyotrophic lateral sclerosis (ALS) patients with rare disease-causing mutations, while advancing understanding of the disease’s overall biology. The initiative, a collaboration between the n-Lorem Foundation, which…

Like many ALS patients who have swallowing issues, a condition known as dysphagia, I follow a regimen of what I can and cannot eat. I’ve accepted this as my new normal for a number of years now, so my emotional reaction to a friend’s recent social media post caught…

Merit E. Cudkowicz, MD,  is the winner of the inaugural Target ALS Rebecca Luker Courage Award in recognition of her work and efforts to help  amyotrophic lateral sclerosis (ALS) patients and the ALS community. Cudkowicz is the chief of neurology at Massachusetts General Hospital, a professor…

Did you know that May has been ALS Awareness Month for the past 30 years? Yes, that’s right, 30 years. Some probably think ALS awareness activities began in 2014 with the ice bucket challenge. At least that’s when many first pronounced the letters A-L-S before dumping a bucket of water…

More than 5,000 people are diagnosed with amyotrophic lateral sclerosis (ALS) each year, and the out-of-pocket costs of care are an estimated $250,000 for each person with the disease, according to the ALS Association. These are just a couple of the statistics about ALS that advocates, organizations, and…

Treatment with Coya Therapeutics‘ ALS001, a regulatory T-cell (Treg) therapy being developed for amyotrophic lateral sclerosis (ALS), was found to reduce markers of oxidative stress — a type of cell damage — and inflammation in a small early trial. The experimental Treg therapy was tested in a Phase 1…

An international team of researchers is asking adults with amyotrophic lateral sclerosis (ALS) and their family caregivers to complete an online survey about their experiences with stigma around the disease. The results are expected to help researchers better understand negative attitudes and untrue beliefs about ALS faced by patients…