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Help Us Turn Progress into a Cure

Carson and Chase Miller in 2021

Photo credit: Lorelei Voorsanger - http://photosbylorelei.com/

"SISU"

A Finnish term characterizing determination, stoicism, perseverance, strength of will, and never backing down in the face of adversity.

MEPAN Syndrome is a an ultra-rare neurodegenerative mitochondrial disease that first appears in early childhood. Patients have trouble with voluntary movement and balance, and typically develop vision issues. These symptoms worsen over time and can leave patients unable to walk independently, produce speech, and legally blind. 

 

Our sons Carson and Chase were diagnosed with MEPAN Syndrome in 2018 and require help with every aspect of daily living. We established MEPAN Foundation to accelerate collaborative scientific research to find treatments that will improve the quality of life for patients with MEPAN and similar neurodegenerative conditions.

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