As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…
With my gym closed, I’ve been getting my daily exercise by cross-country skiing. A calm happiness washes over me at about the 2-kilometer mark, after my heart rate is up and endorphins flood my brain. I take in the beauty of the woods. Soft snow, the vestige of winter,…
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…
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…
1. Why is this survey being conducted? The purpose of this survey is to gather information from individuals with amyotrophic lateral sclerosis (ALS) so that Bionews and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger ALS community. 2. What will…
CONSENT FOR SURVEY PARTICIPATION Why is this survey being conducted? The purpose of this survey is to gather information from individuals with amyotrophic lateral sclerosis (ALS) so that Bionews Services and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger ALS…
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…
