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…
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…
Columbia University medical researchers have received a grant from the Chan Zuckerberg Initiative, named after Facebook founder Mark Zuckerberg and his wife Priscilla Chan, to construct an atlas of gene activity in all cells in the spinal cord. The atlas has the potential to become a reference for investigators researching injuries…
As Congress begins debate this week to overhaul the U.S. tax code, lawmakers should leave the Orphan Drug Act (ODA) — and the tax incentives it offers pharmaceutical companies to develop therapies for rare diseases — off the table. That’s the message being pushed by the National Organization for…
Quick! Guess where I was the other day? Hint: I spent quality time with a few ghosts, goblins and vampires. Nope, I didn’t visit a haunted house – I went for a haircut! You sure can’t tell from the outside, but where I go has an explosion…
Ipsen Biopharmaceuticals, an affiliate of Ipsen, announced that five abstracts discussing Dysport (abobotulinumtoxinA) were presented at the American Academy of Physical Medicine and Rehabilitation (AAPM&R) Annual Assembly, held Oct. 12-15 in Denver, Colorado. Dysport, a botulinum toxin product, is approved for treatment of spasticity, or shaking, in adult patients, which…
In this video from ITV’s This Morning, television presenter Charlotte Hawkins talks about her father’s journey with motor neuron disease (MND), which is also known as amyotrophic lateral sclerosis (ALS). She highlights how lonely people can feel living with the disease, particularly when they lose the…
