Join us to defeat Lewy Body Dementia

When Sue Berghoff was diagnosed with Lewy Body Dementia, her life was turned upside down. The disease invaded her brain, stealing her ability to make conversation, schedule appointments, shop for groceries, or drive a car. The way of life she knew was fading, but what she did next created a ripple effect of hope and change.

“When I found out I had Lewy Body Dementia, I decided to make something positive from my diagnosis by sharing my story. We need to shed light on dementia and remove its stigma. We’re not doing enough. Research is desperately needed if we’re going to find a cure.”

– Sue Berghoff, Co-founder, The Sue's Story Project –

WITH YOUR SUPPORT, WE DONATED $200,000 TO LBD RESEARCH

Dr. Kathleen Poston

Dr. Kathleen Poston

Dr. Frank Longo

Dr. Frank Longo

Stanford Medicine, Poston Lab   |   Neurology and Neuroscience

Learn about focused Lewy Body Dementia research at Stanford supported by our 2019 fundraising initiative.

Film Synopsis

SUE’S STORY examines one of the greatest challenges of our time: the rise of dementia in a world unprepared to deal with it. The film takes viewers on a journey with Sue Berghoff, whose own struggle with Lewy Body Dementia fuels her determination to bring about change so that people with dementia can live with purpose, dignity and hope. For patients and their caregivers as well as healthcare students and professionals, SUE’S STORY offers an honest, helpful perspective on a little-known yet prevalent and fatal form of dementia.