Beyond Memory is an initiative dedicated to clearing up misconceptions about dementia and creating pathways for support.
WELCOME TO BEYOND MEMORY
A place where caregivers, medical professionals, and advocates shed light on the misconceptions surrounding dementia, providing paths for support, knowledge, and treatment.
Beyond Memory was initiated by the Kissick Family Foundation.
OUR PARTNERS
Beyond Memory is supported by an incredible coalition of organizations.
The Beyond Memory campaign also expresses gratitude to the many other individuals and organizations who have provided their time and expertise to this effort.
A MESSAGE FROM THE KISSICK FAMILY
It’s been seven years since John - our father and husband - was diagnosed with FTD and just over a year since we lost him.
Looking back at those early signs, we were bewildered. Our lifelong sports fanatic watching horror movies instead of football? Our brilliant financial mind falling for scams and giving away money? Our charismatic storyteller slipping out of parties early to hide in his room? None of it made sense.
After countless doctor appointments, thousands in medical bills, a misdiagnosis of Alzheimer’s, and months of fear and isolation, we finally received an FTD diagnosis. We had never heard of it before. We didn’t know dementia could mean anything other than memory loss.
But when we read about FTD, everything clicked. His personality was changing because his brain was changing. It was heartbreaking, but also a relief. Then came the next question: now what? Getting a diagnosis brought clarity, but at first, it also brought a deep sense of despair. We didn’t know anyone else facing this disease.
Eventually we found the support we needed, we enrolled in trials, and we used our family foundation to start investing in scientific research. For the first time, we saw hope. While it was too late for John, we believe deeply that treatments are within reach in our lifetime.
As we began funding research, we soon realized just how urgent it is to build more awareness. If no one knows about FTD, progress stalls - science slows, clinical trials struggle, and families stay in the dark.
This website was born out of our lived experience. It’s not meant to provide medical advice or replace the incredible resources already out there. But we hope it can be a starting point - a place for people searching for answers to feel a little less alone. We encourage you to ask questions, see doctors, get help wherever you can find it. Lean on resources. Don’t give up. Be persistent.
If we can help even one other family avoid the confusion we faced, it will be worth it. John faced the world with brilliance, compassion, determination, humility, and purpose. We follow in his footsteps.
Beyond Memory — initiated by the Kissick Family Foundation, 2025
The content on this website is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.