On a random October day in 2023, my dad’s brain just stopped working. A year later, he was gone — taken by a disease so rare that most doctors never see a single case: Creutzfeldt-Jakob Disease.
If you’ve never heard of Creutzfeldt-Jakob, I can’t fault you. I hadn’t heard of it either until I started panic-googling my dad’s symptoms — hallucinations, ataxia, dystonia, confusion — and saw it listed as the absolute worst-case scenario. That nightmare came true several months later when doctors at Duke University gently delivered the prognosis.
My mom and I were shattered. My dad, already slipping into dementia, simply asked, “Will I still be able to play football?” Dad knew he was the patient — he just didn’t know what for.
Creutzfeldt-Jakob Disease is a rare, fatal brain disorder caused by misfolded proteins called prions. A prion disease you may be more familiar with is Bovine Spongiform Encephalopathy, commonly referred to as “Mad Cow Disease.”
No, my dad had not consumed contaminated meat. A spinal test confirmed it was sporadic Creutzfeldt-Jakob Disease, which, according to the Cleveland Clinic, “happens for unknown reasons.”
To this day, I am gobsmacked by that. Out of all the causes of death, and all the people in this world, my dad died because of something that happens “for unknown reasons” to almost no one. As someone who likes to make sense of everything, that has been a bitter pill to swallow.
There are several types of Creutzfeldt-Jakob. The sporadic version, which my dad had, simply appears without warning. There is also a genetic version, a version acquired from amedical procedure involving contaminated surgical equipment, and a kind linked to eating beef from a cow with so-called “Mad Cow Disease.”
More people need to know this. That’s why I applaud Sen. Jon Husted (R-Ohio) for leading a resolution to recognize November 12, 2025, as Creutzfeldt-Jakob Disease Awareness Day. Awareness is the key to unlocking the funding and research to find a cure for this devastating disease.
But it’s only the first step. Prion diseases receive a fraction of the federal attention other neurological conditions do. Increasing funding from the National Institutes of Health could help researchers develop early-detection tools and, one day, a cure.
After attending my first Creutzfeldt-Jakob Disease Foundation event in the months after my father’s passing, I quickly realized that we were blessed with more time than many families get. We had about a year with dad, and although that year was full of a lot of tough moments, we cherished our time together. Some families have just weeks or days — for them, the confirmation of the diagnosis comes after death.
The Creutzfeldt-Jakob Disease Foundation has been a lifeline for my family. They provided grief support, academic resources, and a deep understanding of what we were experiencing as we watched a loved one die from the inside out. And after speaking with individuals overseas who have lost loved ones due to this disease, I am sad to share that this type of organized support is rare outside of the U.S.
After my dad died, a mobile morgue traveled from Ohio, where the foundation is based, to North Carolina to collect his brain. With our consent, it was donated to researchers studying the disease. It’s what he would have wanted. He had a servant’s heart. Knowing that a part of him is helping others avoid the same suffering would have made him proud.
This Nov. 12, I’ll think of the families who have sat in a doctor’s office and heard the dreaded prognosis. I’ll think of the ones who will one day experience it, and I’ll hope, through awareness — and increased research — that one day no one else will have to lose a loved one to something that “happens for unknown reasons.”
Sara Grace Todd serves as an editorial associate for media and public relations at The Heritage Foundation.
