Patients with neurodegenerative diseases have views that are framed by the context of their lives, and end-of-life care should be equally personalized, respectful and given in a timely way, researchers in a study report. The study, “The views of adults with neurodegenerative diseases on end-of-life care: a…

Findings from a Phase 3 study of tirasemtiv to improve muscle strength — particularly of respiratory muscles — in amyotrophic lateral sclerosis (ALS) patients will likely be announced for a first time on Dec. 8 at the 28th ALS/MND meeting in Boston, a vice president of Cytokinetics, its developer, said…

Even though November is National Caregivers Month, I think we also should include Good Samaritans and caring strangers. Everyone who opens a door or helps carry a bag, hands us items off the top shelf or points us in the right direction; a big thank you…

Everyone suffers from stress from time to time but when you have a chronic disease, stress not only adds to your everyday burden but can often exacerbate the symptoms of your condition. While we can’t avoid stress altogether, there are ways that we help ourselves relax more and not let things…

Biohaven Pharmaceutical has dosed the first amyotrophic lateral sclerosis (ALS) patient with its sublingual formulation of riluzole, BHV-0223, in a pivotal Phase 2/3 trial. The trial aims to demonstrate that BHV-0223’s effects are at least equivalent to Rilutek, an approved tablet formulation of riluzole. The trial initiation was supported by…

Following her husband’s frustration with not being able to do up the buttons on his formal work shirts, Maura Horton came up with a simple and practical solution: magnetic buttons. MORE: Seven facts about amyotrophic lateral sclerosis you might find interesting According to a report on Fox News, Horton’s husband Don…

The U.S. Food and Drug Administration (FDA) has given the green light to Biohaven Pharmaceuticals to advance sublingual BHV-0223, which regulates glutamate communication between neurons, into clinical trials for amyotrophic lateral sclerosis (ALS) patients. The FDA’s  permission to go ahead with the study followed Biohaven’s submission of an investigational new drug…

Children’s National Health System no longer treats just kids. Its Rare Disease Institute, launched in April 2017, has partnered with the National Organization for Rare Disorders (NORD) to become the first of many U.S. “centers of excellence” to look after patients with rare diseases, regardless of age. The effort…

Recently, thanks to my ALS News Today publisher, I had the exciting opportunity to test out an Echo Show. Why would I rate that as exciting? Well, we already owned an Amazon Echo (tower-type) device, but with my ALS-affected voice, I was batting zero activating it.

Researchers have created an atlas that links a set of genes in the DNA to a particular trait or disease, a tool that may advance understanding of certain cell characteristics in neurological diseases like Alzheimer’s, Parkinson’s and amyotrophic lateral sclerosis (ALS). This atlas can be further developed and updated by…