California
nonprofit releases documentary film on YouTube to shed light on
Lewy body
dementia, second most common dementia after Alzheimer's yet
little-known
SAN
JOSE, Calif., Jan. 28,
2025 /PRNewswire/ -- Today, the Susan and Charles
Berghoff Foundation announced the public release of its
award-winning documentary film, Sue's Story: A Journey with Lewy
Body Dementia, in recognition of World Lewy Body Dementia Day.
Affecting an estimated 11 million people worldwide, Lewy body
dementia (LBD) is a challenging and fatal neurodegenerative
condition that as yet has no cure.
Sue's Story: A Journey with Lewy Body Dementia has been
presented in Continuing Medical Education programs offered by
Kaiser Permanente and other health systems; in nursing programs
offered by University of California,
California State University, and
California Community College
systems; and in community education programs offered by
organizations such as AARP.
Now on YouTube, the film centers on Sue
Berghoff who was diagnosed with LBD in 2017. As Sue explains
in the film, she decided to transform her diagnosis into something
positive to help others living with LBD, starting with advocacy.
Also in the film: Sue's husband/caregiver Chuck Berghoff; and neurology and neuroscience
experts Dr. Kathleen Poston
(Stanford Medicine), Dr.
Geoffrey Kerchner (Roche), and Dr.
Elena Call (Kaiser Permanente).
Lewy body dementia (LBD) is an umbrella term encompassing two
different but related diagnoses: Dementia with Lewy bodies (DLB)
and Parkinson's disease dementia (PDD). Historically, LBD has not
been sufficiently prioritized, described or supported in research
funding; Continuing Medical Education; public health initiatives;
or the general media.
The Berghoff's established the Sue Berghoff LBD Research
Fellowship at Stanford (2019), formed the Susan and Charles
Berghoff Foundation (2021), and launched an LBD caregivers
support group (2024). Sue's Story: A Journey with Lewy Body
Dementia won "Best Documentary Film" at the Poppy Jasper
International Film Festival (2018).
About LBD
Lewy body dementia is the second most common neurodegenerative
dementia, a leading cause of mortality in the U.S. LBD is
characterized by cognitive decline, behavioral changes,
hallucinations, sleep and movement problems and autonomic system
dysfunction. LBD has two diagnoses: Dementia with Lewy bodies (DLB)
and Parkinson's disease dementia (PDD). Currently there is no cure
for LBD.
About the Susan and Charles Berghoff Foundation
We
provide dementia education, funding for research, and caregiving
resources for families living with LBD. Watch the film on YouTube.
Connect with us: berghoff-foundation.org, LinkedIn,
Facebook or Twitter/X.
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SOURCE Susan and Charles Berghoff Foundation
