The Sue’s Story Project
Progress is Sweet
“Every day is a new day. If there’s anything I can do, positive things to make things
better for someone else who has this disease, what could be better than that?”
Article and Photo Submitted By The Sue's Story Project Team
ver since The Sue’s Story Proj-
ect got its start three years ago,
co-founders Sue and Chuck
Berghoff and Robin Shepherd
have been advocating for increased de-
mentia awareness, research, and caregiv-
ing resources. South County is showing
support for this grass roots effort, and
progress is sweet.
According to Chuck, “When my wife
Sue was diagnosed with Lewy Body
Dementia, she decided to make some-
thing positive from her diagnosis, and
her decision has been opening doors
Sue, Chuck and Robin formed The
Sue’s Story Project to advocate for
improved quality of life for families liv-
ing with Lewy Body Dementia (LBD).
Step One: learn as much as pos-
sible about the disease. They soon real-
ized that LBD needed more attention if
things were ever going to improve.
LBD is not well-known or under-
stood despite the fact that it’s the third
most prevalent form of progressive
dementia worldwide. Similarities and
differences between LBD symptoms and
those of Alzheimer’s and Parkinson’s dis-
eases make it difficult to diagnose. This
inhibits efforts to establish clinical trials
for targeted drug therapies.
“It’s extremely frustrating for many
families,” Chuck said. “Currently there
is no treatment to prevent, slow or cure
LBD. The average life expectancy from
time of diagnosis—and that’s a gray
area—is six to nine years."
Step Two: partner with organi-
zations in dementia research and
dementia care. They include Stanford
Medicine, Kaiser Permanente, the
Brain Support Network, the National
Caregiver’s Alliance, Dementia Friends,
university nursing schools, and county
as well as city government agencies
focused on healthy aging and senior
Step Three: host informational
events featuring a screening of “Sue’s
Story,” their documentary about Sue’s
journey with dementia, followed
by Q&A with a panel of healthcare,
research and social services experts.
Last year they toured seven cities,
reaching people countywide.
Step Four: form an Advisory Group,
connecting with like-minded people
who can help with the Project mission.
Advisor Nick Gaich is a healthcare
consultant and Board President of
Morgan Hill Community Foundation.
“I’ve seen the benefits of continuing
education for physicians and nurses.
GILROY • MORGAN HILL • SAN MARTIN
We need to develop curriculum around
LBD. This Project not only supports
Continuing Medical Education for phy-
sicians, but also Nursing School train-
ing for university students,” Nick said.
Comedian Robin Williams battled
what he thought was Parkinson’s until
a post-mortem brain autopsy revealed
he had LBD. His wife Susan Schneider
Williams referred to his disease as “the
terrorist inside my husband’s brain” and
called on medical researchers to make
LBD a priority.
The Sue’s Story Project team met Dr.
Kathleen Poston at Stanford and learned
that medical research centers, founda-
tions, and government agencies such as
the National Institute of Health are col-
laborating more to better understand,
diagnose and treat neurodegenerative
“Dr. Poston’s work inspired us to
create a fund at Stanford to support
post-doctoral research focused on
LBD,” Chuck said. “Last year we raised
$200,000 for this objective. Stanford
now has research underway to identify
biomarkers for LBD that could make
diagnosis as simple as taking a blood
test.” Poston is now an Advisory Group
Sue and Chuck are experiencing