About Our Project

The Sue’s  Story Project is a project of the Susan and Charles Berghoff Foundation, a registered public charitable organization that works to increase dementia education, research and caregiving resources, with a special focus on Lewy body dementia.

Our Founding

When Sue Berghoff was diagnosed with Lewy body dementia in 2017, she decided to make something positive from her diagnosis. She co-founded The Sue’s Story Project with her husband Chuck Berghoff and their friend Robin Shepherd. The project’s focus was to shed light on Lewy body dementia and advocate for much-needed education and research to find a cure. Central to this effort was the development of a documentary, Sue’s Story: A Journey with Lewy Body Dementia, which powerfully conveys Sue’s message of advocacy and hope. Sue’s willingness to share her story inspired not only her community, but also researchers and physicians at organizations such as Stanford and Kaiser Permanente to join the fight to defeat Lewy body dementia.

Learn more at www.berghoff-foundation.org.