When I was a child, my elderly great-aunt Martha joined my family every Christmas Eve to participate in gift opening. I felt bad that she only got one present while my brothers and I received so many. But she seemed happy with the pair of slippers or homemade ornaments my…
Expanding World, Shrinking World
The HudsonAlpha Institute for Biotechnology has received a $20,000 ALS Association grant to continue its research collaboration with Crestwood Medical Center in Alabama. Called “Impacting ALS,” the project’s goal is to identify genetic changes that contribute to amyotrophic lateral sclerosis (ALS), with the overarching goal…
“Baby steps.” That was the advice imparted to Bob Wiley by his psychiatrist, Dr. Leo Marvin, in the movie “What About Bob?“ Wiley, portrayed by Bill Murray, has a perfect storm of maladies including perhaps bacillophobia…
microRNAs found in brain-derived exosomes — microscopic vesicles containing genetic material, proteins and fats shed by cells into the bloodstream — may be useful blood biomarkers to diagnose amyotrophic lateral sclerosis (ALS), a study reported.
Oh my! We’re still facing challenges brought on by the pandemic and most likely will continue doing so for some time. Right now I’m feeling the loss of being able to sit down with friends to chat and catch up on the little things in our lives. My many ALS…
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Clinigen’s aldesleukin for the treatment of amyotrophic lateral sclerosis (ALS). Aldesleukin is a lab-made version of the interleukin 2 (IL-2), an immune signalling molecule known to play a key role in the maintenance of a…
Clusterin, a protein that plays a key role in motor neuron health, and ficolin-3, a protein essential for the activation of immune responses, may be promising biomarkers of amyotrophic lateral sclerosis (ALS), according to a recent study. The study, “Levels of clusterin, CD5L, ficolin-3,…
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…
Long delays between symptom onset and diagnosis are common with amyotrophic lateral sclerosis (ALS), and need not be if general practitioners (GPs) were more aware of the disease and its likely “red flags,” a study suggests. Its researchers highlighted specific “flags,” like difficulties with speech or swallowing or muscle…
After our second child was born — back when my husband, Todd, had an undiagnosed weak left arm — we purchased a used minivan. We found the van on Craigslist and drove two hours to purchase it. Six months later, Todd was diagnosed with ALS. We made plans to…
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