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Carbone-Girolamo Family Hosts Strides for CJD Boston in Honor of Several Family Members Who Passed from a Rare Brain Disease

Denise Chainey has now seen three of her family members pass from a rare, neurodegenerative disease that has no treatment or cure. Her grandfather, uncle and cousin’s symptoms were similar – losing balance, hallucinations, then rapidly declining within weeks to losing the ability to eat or walk.

Creutzfeldt-Jakob Disease (CJD), a “prion” disease, is caused by misfolded proteins in the brain, called prions. There are three forms of CJD – Genetic, Sporadic and Acquired. Genetic CJD is one form of CJD where if one parent carries the mutation there is a 50-50 chance for each child to inherit the gene.

After learning that her family had Genetic CJD she was motivated to get involved with The CJD Foundation’s annual Strides for CJD fundraising and awareness-generating walk/run.

For her—it’s more than personal—she’s racing to help fund research to find a cure. “After seeing what genetic CJD did to my uncle, I never want to see anyone ever have to go through that again,” said Denise. “There is significant value to raise money for research so our younger family members may one day not have to deal with this horrific disease.”

More than 100 community members who have had a devastating experience with prion disease typically attend. “It is so important to have a support system and meet other families who know what you are going through—from the shock, devastation and grieving process,” said Denise.