Our amazing Dad, Frank Bennett (“Frankie B,” to many of those who knew him) was diagnosed with probable prion disease on January 1, 2023. Like many others, our family had never heard the term “prion” before my Dad’s diagnosis. A mild confusion starting in the Fall of 2022 rapidly spiraled into an inability to walk on his own, read one of his beloved history books, or recognize the faces of his children.

On the day he was diagnosed, neurologists told us that our Dad’s survival time would probably range from a few weeks to six months.  We were devastated to learn there is no treatment available for prion disease; all you can do is help the patient manage their symptoms as their body starts shutting down. For our Dad, like so many others who encounter this fatal disease, by the time he received a diagnosis, he was mentally incapable of creating memories with the little time he had left.   

We're firm believers that even in the most difficult times, there’s positivity tucked in for the taking.  For our family, we found hope in June 2023, when Dr. James Mastrianni (MD, PhD) of the University of Chicago treated our Dad. Although Dr. Mastrianni’s evaluation confirmed our Dad’s probable prion disease diagnosis, we also learned that he and his team are working every day to understand prion disease and develop treatment options.  His work gives us hope that one day, prion disease will no longer be labeled as “invariably fatal.”

Our Dad would have wanted to be a catalyst for change.  We really think that’s why Dr. Mastrianni came into our lives. To Dr. Mastrianni, solving the mystery of prion disease is the shortest path to curing not only Creutzfeldt-Jakob (the most common prion disease), but it’s also the shortest path to curing Alzheimer’s and many other neurodegenerative diseases.  Dr. Mastrianni and his team are doing groundbreaking research to find actual treatments for prion disease and other uncurable neurodegenerative disorders like Alzheimer’s.  His team has already identified a way to turn off the prion gene in mice, and they’re investigating ways to create a noninvasive drug to turn off this gene in humans.  Dr. Mastriannni was also the first investigator to discover a unique relationship between the protein that is central to both prion disease and the development of Alzheimer’s disease.  The revolutionary work of Dr. Mastrianni’s team has the potential to change the landscape of uncurable neurodegenerative diseases that millions face every year. 

Traditional funding methods for innovative research like Dr. Mastrianni’s have become limited over the years. His team therefore relies heavily on outside philanthropic support to continue its research.  Dr. Mastrianni and his team have set fundraising goals that are critical to understanding and treating neurodegenerative diseases.  Of their $2.5 million goal, we were thrilled to learn they’ve already raised $1.75 million - they are so close. If they reach their goal, it can shorten the timeline of bringing prion disease treatment to human clinical trials from ten years to five years. They’re at the threshold of remarkable change right now.

When our Dad still had the ability to understand his symptoms, he could clearly sense that something wasn't right.  It was so hard to see the fear of the unknown on his face.  But if he knew that his story could change the future for others, we know he’d still write the same ending for himself - that’s just who he was. But we don’t want his story to end here. 

We know that each of you has likely lost someone to a devastating disease with no cure. There are thousands of other diseases in need of research, and our resources are needed in so many different places right now.  But when you look back on a series of small steps, you often realize you’ve made a huge leap.   With that as a guiding principle, we’d be forever grateful if you’d keep our Dad’s story alive by making a $1 donation to Dr. Mastrianni’s research and make an even bigger impact by passing this memorial page onto others. Email it, post it, tweet it - if that happens enough times, we really believe we can change the future for those battling neurodegenerative diseases.    

Thank you so much for taking the time to read about our guy Frankie B. and the amazing work of Dr. Mastrianni and his team. 

If you would prefer to donate by check, checks made payable to "University of Chicago Medicine" may be sent to the following address:

The University of Chicago Gift Administration
Frank Bennett Memorial
5235 South Harper Court
4th Floor
Chicago, Illinois 60615

(Please also write "Frank Bennett Memorial" in the check memo line)