Influencing Mindsets: When to Speak Up About COVID-19 Guidelines

Because I have ALS, I need to minimize the risk of getting the coronavirus. So, I’m doing my best to follow the COVID-19 social distancing guidelines. And I appreciate the efforts of everyone who’s doing the same. Certainly wearing a mask and gloves, wiping down surfaces, and keeping…

A team at the Rowan University School of Osteopathic Medicine has received a $1.6 million grant to study the role of the SOD1 protein — whose gene is often mutated in amyotrophic lateral sclerosis (ALS) — in the communication between the gut and the brain. The National Institutes…

FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…

The Muscular Dystrophy Association (MDA) is hosting a Facebook Live event on May 1 concerning precautions and best practices needed to protect the amyotrophic lateral sclerosis (ALS) community during the COVID-19 outbreak. The half-hour event, which kicks off ALS Awareness Month, is to begin at…

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Since my husband has ALS and is paralyzed, his life is much the same under COVID-19 stay-at-home orders. Todd still spends his days on the computer, except now there are many more people online, so he feels more connected. However, the kids and I have had to find a…

A weak link only between a person’s current smoking study and greater risk of amyotrophic lateral sclerosis (ALS) was seen by scientists in a U.K. study, with no evidence that lifetime smoking exposure affects such risk. The researchers believe that this weak association is likely a “false-positive,” and there…

Injecting tiny particles carrying adapalene — an activator of the retinoic acid signaling pathway — to the brain and spinal cord of mice with amyotrophic lateral sclerosis (ALS) can prolong animals’ survival, improve their motor function, and prevent neurodegeneration, a study shows. The study, “…

Remember those “100 Things to Do During a Pandemic” emails that arrived in our inboxes a while back? Well, a few days ago, I came across one, and while reading it, I felt the symptoms of “compare-despair” welling up in my mind. Years ago, I might have followed the negativity…