Boston, MA

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

Denise Chainey and Doreen Carbone have now seen four of their family members pass from a rare, neurodegenerative disease that has no treatment or cure. Their grandfather, uncle and two 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 their family had Genetic CJD they were motivated to get involved with The CJD Foundation’s annual Strides for CJD fundraising and awareness-generating walk/run.

For them—it’s more than personal—they are 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 and Doreen added “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.