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…
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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…
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, “…
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…
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…
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