By Hannah Curran, Editor
PELL CITY — A Springville family is hosting their second annual fundraiser walk, “No Mountain Too High for OCNDS,” on Saturday, Oct. 1, at 10:30 a.m., at Lakeside Park in Pell City, to bring awareness to Okur-Chung Neurodevelopmental Syndrome (OCNDS).
They will have raffles such as Alabama football tickets, a photography session, merchandise, and gift cards. All proceeds will benefit the CSNK2A1 Foundation.
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Adelynn Cole, 5, was diagnosed in 2019 with Okur-Chung Neurodevelopmental Syndrome (OCNDS), a rare genetic disorder first identified in 2016. OCNDS is caused by a mutation in the CSNK2A1 gene. The gene CSNK2A1 creates a protein called CK2, which plays a crucial role in development. Therefore, a mutation in this gene disrupts typical development.
“You can walk in your neighborhood; you can walk wherever it doesn’t matter,” David Cole, Adelynn’s father, said in a previous interview. “We’re trying to raise money for the foundation to help Adelynn find a cure or find a treatment for the condition.”
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Adelynn is the only reported case of OCNDS in Alabama, and there are fewer than 200 reported cases worldwide.
David said that everyone diagnosed with OCNDS is affected differently; in Adelynn’s case, she can’t walk. David explained that when Adelynn was diagnosed, he discovered he also had the gene for OCNDS, but he never experienced any developmental difficulties growing up.
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To donate or find a way to help raise awareness about OCNDS, visit www.csnk2a1foundation.org/donate/ and join the fight against OCNDS.