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. Rather than be defeated by LBD, Sue became a powerful advocate for change, and The Sue's Story Project was born.

“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 –

TOGETHER WE’RE MAKING AN IMPACT ON LEWY BODY DEMENTIA

THE SUE BERGHOFF LBD RESEARCH FELLOWSHIP AT STANFORD

Thanks to your support, new research is underway to identify novel markers of Lewy body dementia. This work is critical in development and testing of therapies and a cure.

Stanford’s collaborative approach—integrating clinical, behavioral and translational research—is reason for hope for families living with LBD.

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We continue to evolve our dementia education programs for healthcare teams, college students, caregivers and families. Your support propels our efforts.

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Current Initiatives

CME/CE training for doctors and nurses

Dementia education for college students

Funding for focused medical research

Learning tools for dementia caregivers

Request a Film Screening

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.

Ask us about film screening & discussion events.