“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…
The ALS Association was founded in 1985 and is dedicated to helping patients who suffer from amyotrophic lateral sclerosis (ALS). The non-profit organization operates with a global scope, coordinating their research with some of the world’s top scientists. Here are five more things this incredible organization does: Research…
The presence of diabetes is associated with a 70 percent reduction in the risk of amyotrophic lateral sclerosis (ALS), new study shows. The study, titled “The role of pre-morbid diabetes on developing Amyotrophic Lateral Sclerosis,” was published in the European Journal of Neurology. ALS patients tend…
In this video from the Brattleboro Reformer, learn more about how ALS patients like Andy are diagnosed from a doctor’s point of view. MORE: Andy shares his ALS journey in this touching video Neurologist Dr. Elijah Stommel explains that he sees two newly diagnosed ALS patients each week and that each…
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