For most people, the holidays are a time of joy and good cheer. But when living with ALS, or providing care for someone who does, holiday activities have the potential to add stress to an otherwise happy season. Over the years, I’ve come to rely on a…
The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. A similar package before the Senate Finance Committee does not repeal the credit…
The Muscular Dystrophy Association (MDA) is financing 13 new research programs aimed at developing treatments for amyotrophic lateral sclerosis (ALS) and other life-threatening diseases. Toward that goal, the organization recently announced it would distribute $3.5 million in new development grants. For the summer round of grants, 244 applicants submitted…
Tirasemtiv is an experimental therapy that was being developed by Cytokinetics for the potential treatment of amyotrophic lateral sclerosis (ALS). Although it was shown to decrease muscle fatigue and increase skeletal muscle force in preclinical studies and early clinical trials, the development…
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…
