diagnosis

Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world. But a new analysis shows there are as many as 10,867 rare diseases globally. And that…

An imaging analysis platform that examines the brain’s white matter in MRI scans could help to diagnose amyotrophic lateral sclerosis (ALS), a new study suggests. The results were presented by Braintale at the European Academy of Neurology (EAN 2022) Congress, held both digitally and in Vienna, Austria. The poster…

Sometimes the simplest things can help us the most. That’s what I learned in the months right after I received a diagnosis of ALS. Like most newly diagnosed ALS patients, I felt overwhelmed trying to find out what ALS was, not really wanting to know, and just wishing…

In response to the National Institute of Neurological Disorders and Stroke‘s (NINDS) request for community input regarding what it should prioritize to accelerate amyotrophic lateral sclerosis (ALS) research, the ALS Association’s overarching message is this: move swiftly to help patients. NINDS, which is part of the National…

Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries…

“‘There must be some way out of here,’ said the joker to the thief, ‘There’s too much confusion, I can’t get no relief.'” When I first heard “All Along the Watchtower” by Bob Dylan, I thought, with my 9-year-old sensibility, that the song referred to a monolith of timepieces.

Ady Barkan was a new father and activist when, at age 32, he learned that he had amyotrophic lateral sclerosis (ALS). His ensuing fight for universal healthcare while dealing with the progressive neurodegenerative disease is at the center of  “Not Going Quietly,” a film debuting on PBS today,…

Most folks know me through my column, “Living Well With ALS,” and perhaps don’t know that for the past three years, I’ve also been a co-moderator of the ALS News Today Forums. I thoroughly enjoy this responsibility, and to bring a bit of levity to this online job,…

The National Institute of Neurological Disorders and Stroke (NINDS) is asking people across the amyotrophic lateral sclerosis (ALS) community to submit their preferences regarding what should be prioritized to accelerate ALS research. NINDS, which is part of the National Institutes of Health (NIH), is seeking contributions from ALS patients,…

Amydis announced plans to launch a first clinical trial next year into the ability of its small molecule tracer to detect toxic TDP-43 clumps — a hallmark of amyotrophic lateral sclerosis (ALS) — in the eye’s retina. Its announcement follows a preliminary meeting with U.S. Food and Drug Administration…