Saugus woman hosts Strides for CJD Boston to raise awareness about rare brain disease
(Editor’s Note: The following info is from a press release issued by the CJD Foundation this week.)
Denise Chainey has now seen three of her family members pass from a rare, fatal, neurodegenerative disease that has no treatment or cure. The symptoms for the Saugus woman’s grandfather, uncle and cousin were the same: 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. There are three forms of CJD: sporadic, genetic and acquired. Genetic CJD is the 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, Denise was motivated to get involved with the CJD Foundation’s annual Strides for CJD walk/run to raise awareness and funds. For her, it’s more than personal. She’s racing to help fund research to find a cure.
Registration will be at 9 a.m. There will be opening remarks at 9:45 a.m. The walk will begin at 10 a.m. and conclude at 12:30 p.m. There will be an auction and raffle at noon.
“After seeing what genetic CJD did to my uncle, I never want to see anyone ever have to go through that again,” Denise said.
“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,” she said.
On Saturday, Oct. 1, Denise will host the Boston Strides for CJD walk/fun run at the Breakheart Reservation, one of 23 similar events happening across the country. 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,” Denise said.
Families fundraise before the event, with all money raised benefitting The CJD Foundation, Inc. (CJDF), a 501(c)(3) organization, to provide family support, medical education and research programs. They are working together to find a cure.
“There will be some great raffle prizes and handcrafted items available for a donation,” Denise said.
To date, the CJDF has funded 70 research grants that are focused on improving diagnosis and understanding of the disease and on seeking treatments.
For more information, please contact Denise at firstname.lastname@example.org. To register, please visit strides4cjd.com.
More about CJDF: The mission of the Creutzfeldt-Jakob Disease Foundation, Inc. is to support families affected by prion disease, raise awareness and support medical education and research. CJDF has received the top rating from Charity Navigator, America’s largest independent charity evaluator, for the past four years. To learn more about prion diseases and how you can help support this mission, visit www.cjdfoundation.org