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You’re not alone.

Read stories shared by families impacted by prion disease.

Amanda’s Story

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.”

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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

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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.

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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.

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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.

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Golden Family 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.

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Hunter Family Story

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

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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.

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Lavonne’s Story

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

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Rhonda’s Story

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

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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.

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Trevor’s Story

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:

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More Family Stories

Michelle’s Story

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.

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Brooke’s Story

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.

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Kristen’s Story

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.

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David’s Story

David, an entertainment, lifestyle and wellness reporter at USA TODAY recounts his dad’s illness and processing grief in these articles.

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Rosemary’s Story

Rosemary Vaswani is a poet and wrote several poems about CJD in memory of her husband. Follow her on Instagram @rosepoemsthebitterandthesweet.

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