To support Salla disease treatments, research, education, awareness, and family networks. You can purchase these shirts if you are unavle to attend.
All funds raised will go towards S.T.A.R. Foundation
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Full story
Kori was diagnosed with intermediate severe Salla Disease at 3 years old.
Salla is a genetic lysosomal storage disease that primarily affects the nervous system. It involves defects in a protein called sialin, which is needed to move a substance called free sialic acid within cells. Symptoms are due to the toxic build-up of sialic acid in the cells, particularly in the nervous system. This disease causes developmental delays, spastic muscle movements, seizures, low muscle tone, as well as other symptoms that may not be as common.
Salla disease is the mildest form in a group of diseases called sialic acid storage disorders. There is a moderate form called intermediate severe Salla disease and a severe form known as infantile free sialic acid-storage disease (ISSD).
Approximately 130 individuals are believed to currently be diagnosed with Salla disease, mostly in Finland and Sweden, with less than a dozen known cases, thus far, in the United States.
We are on a mission to raise money to help fund treatments, research, education, awareness, and family networks for our Kori and other families affected by this rare disease. There will be a walk September 8th to raise awareness for this ultra-rare disease! Grab your shirt to show your support for Kori Bear. Thank you!
