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." Read more





Brian's Story
— Inspired by his grandmother — the late Barbara Tanz — and her battle with CJD, Brian ran the 2016 Boston Marathon in her memory and is pursuing a medical career in neurology. Read more




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. Read more




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. Read more



Jeanne's Story — When CJD took the life of Jeanne's husband, Michael, she became a woman on a mission. Read more





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




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. Read more





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




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. Read more




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