Our Vision

We envision a dementia-free world™

Our Purpose

We work to increase dementia awareness, caregiving resources and research with a special focus on Lewy body dementia

Our Values

  • Humanity
  • Integrity
  • Knowledge
  • Commitment
  • Hope

Our Founding

The Sue’s Story Project was co-founded by Robin Shepherd, Sue Berghoff and Chuck Berghoff, following Sue’s diagnosis with Lewy body dementia in 2017. After a few months of grieving and contemplating life with progressive dementia, Sue decided to turn her diagnosis into something positive. Robin, Sue and Chuck assembled a team and formed partnerships with Stanford University, Kaiser Permanente and other organizations to address a previously unmet need for increased education, research and resources focused on Lewy body dementia. Today, we offer high-quality educational programs and support medical research focused on Lewy body dementia. This is our mission until a cure is found and Lewy body dementia is a thing of the past.

“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, Kaiser Permanente