Read stories shared by families impacted by prion disease.
Alex wrote the script and directed the film Farewell Fire, a story about life, death, and the perspective that nature gives us on how to live, inspired by his father who passed away from Creutzfeldt-Jakob Disease
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.”
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
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.
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.
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.
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.
The past several years, Byron Jones, a Dallas Cowboys Cornerback, has chosen to raise awareness of and support The CJD Foundation through the NFL’s My Cause My Cleats Program. The players wear their designed cleats in
Take some great advice from Janine, whose fundraisers — held in honor of her husband’s memory — have proven to be very successful.
When CJD took the life of Jeanne’s husband, Michael, she became a woman on a mission.
Find out more about Kathy and who inspires her to host this annual fundraiser that supports CJD research.
Frank S. Lamari, Jr. lost his life to CJD on May 14, 2021. The Lamari Family began hosting Strides for CJD in Johnsonburg, PA in October 2021 and was the 5th highest fundraising team nationally in
Harvey L. Hall, Bakersfield, California’s 25th Mayor, and an EMS pioneer, as the founder of Hall Ambulance Service, lost his life to CJD on May 19, 2018, just two weeks and seven hours after diagnosis.He was
Discover how Rhonda celebrates the life of her husband, Jon, by hosting an annual fundraising event that supports scientific research grants.
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 is a producer and editor. He is known for his production of the television series, “Wahlburgers” and “Alaska: The Last Frontier,” but we think his greatest work is the 2014 film, “One in a Million:
Brooke is a Research Grant Recipient whose father had sporadic CJD. She is fighting for a cure and wrote the article “How I learned to stop researching and live in the moment” for the Neurology Journal.
David, an entertainment, lifestyle and wellness reporter at USA TODAY recounts his dad’s illness and processing grief in these articles.
Joyce wrote a “Tiny Love Story” for the New York Times titled “Our Goodbye” about her husband.
Kristen’s mother’s CJD symptoms started when she noticed that her slippers kept dropping off her feet when she was sitting at a high-top table and then slowly other minor symptoms of confusion and losing balance began her interaction with a neurologist.
Michelle is a freelance editor and writer based in Philadelphia, PA who describes her uncle’s symptoms and progression of CJD in her essay “Tangles,” published on her Story.
Mike wrote this song and created the video in memory of his wife of nearly 22 years…
Rosemary Vaswani is a poet and wrote several poems about CJD in memory of her husband. Follow her on Instagram @rosepoemsthebitterandthesweet.
In January 2012, Sherry Fabian (Sher), wife of Tom Fabian, had the idea to compile a Family Cookbook…
This website was made possible by a generous donation from Cookie Stivison, in memory of her husband Tom Stivison, and a grant from the Centers for Disease Control and Prevention.
