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



Brandi and Jeffrey's Story — After Brandi’s father died of CJD, she and her husband, Jeffrey, made it their mission to raise awareness of prion disease.  As hosts of Beverly Hills Strides for CJD, they have raised funds for CJD Foundation programs and research and lent support to affected families, as well as attracting media attention to the cause. Read more


Brian's StoryInspired 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



Charlotte's Story  Charlotte and her family have hosted several fundraisers in Massachusetts in memory of their beloved Amale, including a pop-up shopping benefit, a fundraiser dinner and the annual Hope for CJD charity 5K walk. 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



Golden Family's Story Helen Golden and her two daughters, Shannon and Michelle, began hosting the Pittsburgh area Strides for CJD event in 2018 in memory of their beloved husband and father Pat Golden. Read more




Hunter Family's Story The parents of Diana Hunter participated in an interview about what it meant to them to participate in the autopsy program at Cleveland's Alzheimer's Disease Research Center. Their family friend, Byron Jones, also supports The CJD Foundation through the NFL's My Cause My Cleats Program. 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



Lavonne's Story
  After her husband Harvey L. Hall, Bakersfield, California’s 25th Mayor, passed away from CJD, Lavonne started the Bakersfield Strides for CJD event. Learn how she is dedicated to finding a cure and educating people about CJD. 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


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