How My AFOs Helped Me Learn to Live with ALS

Sometimes we need a nudge to help us get over a mental funk and back into the swing of life. My nudge came from a pair of white ankle-foot orthoses (AFO) with whom I had been having a love-hate relationship. Love ’em or hate ’em, they did end up becoming an…

A specific type of genetic alteration — known as epigenetic changes — observed in patients with amyotrophic lateral sclerosis (ALS) may lead to novel treatments and diagnostic tools, according to a review study. The study, “Epigenetics in amyotrophic lateral sclerosis: a role for histone post-translational modifications…

Scientists created a new prognosis model to predict the risk of respiratory insufficiency or death within six months of follow-up in patients with amyotrophic lateral sclerosis (ALS). The study, “Development of a prognostic model of respiratory insufficiency or death in amyotrophic lateral sclerosis,” was published in the…

On June 21, bicyclists will set out to make a three-day, 270-mile journey to raise funds for the ALS Therapy Development Institute. The Tri-State Trek expedition begins at Boston College in Chestnut Hill, Massachusetts, and ends in Greenwich, Connecticut. Proceeds go to the institute to advance its research into…

With an estimated 1.37 billion inhabitants, India will likely surpass China in five years as the world’s most populous country. That also means it will have more rare-disease patients than any nation. It already has more than twice as many as the 28-member European Union. Harsha K. Rajasimha, a genomics…

A zero-sum game is a situation in which the accumulation of gain is accompanied by a sum of loss of equal value. The net result is always zero. From the get-go, ALS seeks to make that outcome an impossibility. It strives to force a plunging and irreversible deficit. In the…

Continuing its support for a potential therapy for amyotrophic lateral sclerosis (ALS), Australia-based organization FightMND has granted about $700,000 to biopharmaceutical company Collaborative Medicinal Development. The money will fund a randomized, double-blind, placebo-controlled study of CuATSM, one of CMD’s lead investigational therapies. According to a news release, the…

Newly diagnosed amyotrophic lateral sclerosis (ALS) patients often experience poor sleep quality due to symptoms of depression and difficulty turning in bed, a patient survey shows. The study, “Poor Sleep Quality in Patients With Amyotrophic Lateral Sclerosis at the Time of Diagnosis,” was published in the Journal…

Project ALS and Columbia University are launching a new platform with a goal of discovering more useful treatments for amyotrophic lateral sclerosis (ALS) patients, and pushing the most promising candidates to clinical trials. Core, as it…

Aquestive’s new drug application for Exservan — an investigational oral film of riluzole to be used as an add-on therapy for amyotrophic lateral sclerosis (ALS) — has been accepted by the U.S. Food…