This Houston Methodist video is all about Kevin Kinchen. Kevin was diagnosed with amyotrophic lateral sclerosis (ALS) seven years ago, but he hasn’t let that stop him from getting on with his life. MORE: Learn more about the beloved Hollywood publicist who was diagnosed with amyotrophic lateral sclerosis in…
Masitinib may potentially help amyotrophic lateral sclerosis (ALS) patients by targeting mast cells, a Uruguayan study shows. The study, “Evidence for mast cells contributing to neuromuscular pathology in an inherited model of ALS,” appeared in JCI insight. ALS, a neurodegenerative disorder, is characterized by…
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…
“Have you seen this?” The opening line of my friend’s email certainly caught my attention. Turns out my friend sent along a link to a website, one of the new online ALS resources that have been popping up lately. Eagerly I checked it out, and being pleased with…
Military veterans in the United States who were deployed to World War II or who handled burning agents during their service show shorter amyotrophic lateral sclerosis (ALS) survival, a new study finds. The research, “Military service, deployments, and exposures in relation to amyotrophic lateral sclerosis survival,” appeared in…
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…
More therapies are now available for the 30 million or so people with rare diseases in the U.S. than ever before, and millions of dollars are being invested in clinical studies that will test new ways of evaluating — and advancing — potential treatments, including the use of natural history…
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…
Voyager Therapeutics has recently presented data of its leading adeno-associated virus (AAV) gene therapy for several neurological diseases, including amyotrophic lateral sclerosis (ALS), at the Congress of the European Society of Gene and Cell Therapy (ESGCT), Oct. 17-20 in Berlin, Germany. In their poster, “Translation of Intrathecal Delivery of an AAV Gene…
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…
