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…
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…
Changes in the metabolism of a class of fat molecules called sphingolipids may be a cause of motor neuron diseases like amyotrophic lateral sclerosis (ALS), a study reports. Targeting these alterations may open new way of treating these conditions. Sphingolipids are a class of lipids (fats) with a…
When someone asks how I am in passing, I know the script: “I’m fine. How are you?” Sure, the question and response are meant to be pleasantries in our polite society, but since my husband has ALS, some days the question feels weighty. It stirs smoldering emotions, reigniting the…
“Everybody has a plan until they get punched in the mouth.” –Mike Tyson The author Lee Child includes that quote in his Jack Reacher crime novel series as part of the title character’s mantra. Reacher always endeavors to strike the first blow. The…
Recently, I noticed a surprising side effect from just a few weeks of following the stay-at-home guidelines: I’ve been talking less. A whole lot less. And to be honest, on some days, my conversations were limited to “yes” and “no” answers. That worried me. Because I’ve worked hard to prevent…
The other morning, I woke up to find a note on my husband’s wheelchair cushion: “Buttercup, please cook the sausage. Love, Todd.” He was reminding me of the bratwurst I had pulled out of the freezer a couple days before. His arms haven’t worked in years because he has ALS,…
