NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

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…

A  way of examining multiple genes or the entire human genome at the same time, called next-generation sequencing (NGS), is a promising tool for diagnosing amyotrophic lateral sclerosis (ALS) in routine clinical practice, a review study suggests. This method’s approach is faster and less expensive than the standard…

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 amyotrophic lateral sclerosis (ALS) symptoms emerge during adolescence, mutations in the FUS gene are likely to blame, findings from a case report suggest. Mutations in this gene also are the cause of some adult-onset ALS cases. However, FUS-associated ALS is more aggressive in children in whom these…

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…

Levels of plasma creatinine — a metabolic product of healthy muscle — are significantly associated with the functional status of amyotrophic lateral sclerosis (ALS) patients, and can help predict their survival, results from a new study show. The findings suggest that plasma creatinine may be an important biomarker…