Family Stories

Families of patients with prion diseases are amazing people, and they often want to share their stories with others going through the same experience -- so they know they are not alone. We are proud to share their stories of courage with you.


Amanda's Story
 -- Follow the journey of Amanda and her husband, Bradley, as they fight to have children free of the gene that causes Gerstmann-Straussler-Scheinker disease, a prion disease that has "stalked her family for generations."




Ed's Story -- Gain first-hand knowledge about event planning from Ed who, along with his family and friends, grew his wife's memorial fundraiser from a small walk to a multi-state golf outing.




Janine's Story -- Take some great advice from Janine, whose fundraisers -- held in honor of her husband's memory -- have proven to be very successful.




Kathy's Story -- Find out more about Kathy and who inspires her to host this annual fundraiser that supports CJD research.




Lauren's Story
 -- Learn what Lauren does to honor the memory of her mother-in-law, Sonia, and her husband, José, who passed away from Gerstmann-Sträussler-Scheinker disease.






Rhonda's Story
 -- Discover how Rhonda celebrates the life of her husband, Jon, by hosting an annual fundraising event that supports scientific research grants.




Sonia & Eric's Story
 -- Read the compelling story of Sonia and her husband, Eric, as they change career paths to become researchers and race to find a cure for prion disease, which runs in a genetic form in Sonia's family.




Trevor's Story
 -- Watch Trevor's 2014 film, "One in a Million: A CJD Documentary," in which he interviews medical experts about Creutzfeldt-Jakob Disease, follows the downward spiral of the illness in his mother and learns if he, too, carries the gene.