The Barrow Neurological Institute in Phoenix, Arizona, is calling on people with amyotrophic lateral sclerosis (ALS) and their family members and friends to participate in a biomarker study that aims to create a bank of biological samples and clinical data collected over time. Data will be made available…

One-time delivery of a CRISPR-based gene therapy significantly reduced the buildup of toxic RNA molecules resulting from C9ORF72 mutations in cells and mouse models of amyotrophic lateral sclerosis (ALS), the therapy’s developer, Locanabio, reported. The approach was designed using the company’s CORRECTx platform, which uses CRISPR technology to…

After several years of support, the late-stage biopharmaceutical company Cytokinetics is reaffirming its commitment to the ALS Association and its efforts to battle amyotrophic lateral sclerosis (ALS) and assist the ALS community. In addition to backing nationwide organizational efforts, Cytokinetics has, for more than a decade, provided support…

A couple weeks ago, when my husband, Todd, told me he wasn’t going to attend our kids’ end-of-the-year events at school — including our son’s band concert and our daughter’s choir concert and dance recital — it was a reality check for me about where we are in this ALS…

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…