Written by: Alexandra (Alexa) Putka
Edited by: Colter Giem
This piece was written in collaboration with the 2025 ComSciCon-MI Write-A-Thon.
In 2019, rare diseases in the United States cost almost $1 trillion in direct and indirect costs to patients and caregivers, according to the National Economic Burden of Rare Disease Study. This astronomical number emphasizes that research on rare diseases not only benefits patients and their families, but it also stands to make a considerable societal and economic impact. I am a graduate student researching a rare genetic disease called Spinocerebellar ataxia type 3, or SCA3, which affects one in every 50,000 to 100,000 people. Ataxia means loss of coordination, and symptoms appear similar to drunkenness: stumbling, falling, incoordination, and slurred speech. Symptoms are relentlessly progressive and result in death, usually 10 to15 years after symptom onset. Unfortunately, SCA3 has no known cures or treatments to halt or reverse disease progression. This emphasizes the need for ongoing research to better understand the disease and provide answers for this fatal disease.
Continue reading “Myelin Matters: Understanding Oligodendrocyte Dysfunction in a Rare Neurodegenerative Disease”
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