We envision a dementia-free world™
We work to increase dementia education, caregiving resources and research, with a special focus on Lewy body dementia.
"Dementia does not mean life is over. We need people like Sue and Chuck to talk about dementia and remove the stigma. We've got to focus on quality of life for patients and their families."
— Dr. Kathleen Poston Stanford Medicine
“In all my years as a neurologist, I’ve never seen a patient and caregiver step forward as Sue and Chuck have, to talk openly about their struggle with Lewy body dementia and dedicate themselves to helping others.”
— Dr. Rochelle Woods
The Sue’s Story Project was co-founded by Sue Berghoff and Chuck Berghoff and Robin Shepherd, following Sue’s diagnosis with Lewy body dementia (LBD) in 2017.
Inspired by Sue's desire to make something postive from her diagnosis, they assembled a team and partnered with Stanford University, Kaiser Permanente and other organizations to address the unmet need for increased education, research and resources focused on LBD.
Today, we offer high-quality educational programs and support medical research focused on LBD. This is our mission unti there's a cure.