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 –

Join our $50,000 Match Challenge and Change Lives

JOIN US in the fight to end Lewy Body Dementia

LBD is the second leading form of progressive dementia, affecting millions of people worldwide. There’s no cure yet for this fatal disease, but there is HOPE.

  • With funding, researchers can identify an LBD biomarker so that development and testing of new therapies can proceed and a cure can be found.
  • With education and training, healthcare teams can better identify and care for LBD patients and their families.
  • With dementia-aware plans and policies, public health agencies can implement dementia-friendly services in their communities.

We’re doing all we can to defeat LBD. Your support propels our efforts. Donate by December 31, 2020 and your gift will be matched up to a total of $50,000, thanks to two generous donor families. You can DOUBLE your impact!


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.