Sue Berghoff was in exceptionally good health and good spirits, looking forward to retirement and her “golden years.” She had worked hard, built a successful career, raised a family, and served her community. Sue and her husband had earned the right to kick back and enjoy the fruits of their labors. That all changed the day Sue’s doctor called to say that she had Lewy Body Dementia, a diagnosis that upended her life.
LBD is a progressive and fatal disease that attacks regions of the brain that control language, executive functions, spatial and temporal awareness, mobility, and sleep. It is the second most prevalent form of dementia behind Alzheimer’s, yet few people know about it. Currently there is no cure.
After a brief period of grieving, Sue decided to use her diagnosis as a tool to raise awareness, support services, and research funding to find a cure for LBD. Her commitment and determination are an inspiration to others to join in her journey.
This film captures Sue’s recollection of early signs that something was wrong, her struggle to get a diagnosis, coming to terms with LBD, her husband’s steps to become an effective caregiver, and the birth of a mission. SUE’S STORY was created because Sue wants to shed light on dementia, remove its stigma, spark conversations, and bring about change so others with LBD can live with dignity and hope.
As writer, co-director and producer of this documentary I am humbled by Sue and her husband Chuck for their vision, courage, generosity and indomitable spirit.
Directed by Robin Shepherd and L. Mattock Scariot
Produced by Robin Shepherd
Camera by Nils Myers and L. Mattock Scariot
Additional Camera by Michael Raby
Editing by Nils Myers
Music by Elena Maro
Graphic Design by Tan Huynh
This short documentary film 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 others with dementia can live with purpose, dignity and hope. Sue’s story is intertwined with the voices of medical and healthcare experts who talk about the challenges and what must be done to bring about change. For patients and their caregivers as well as healthcare professionals and students, SUE’S STORY offers a clear perspective on a little-known yet prevalent and fatal form of dementia.
Written and co-directed by Robin Shepherd with L. Mattock Scariot. Filmed and edited by Nils Myers and L. Mattock Scariot. Produced by Robin Shepherd.
Vision & Mission
We envision a world in which people with Lewy Body Dementia can live with purpose, dignity and hope until a cure is found. Our mission is to increase awareness, support services, and research funding to find a cure for this fatal neurodegenerative disease.
We have captured Sue Berghoff’s journey with Lewy Body Dementia (LBD) in SUE’S STORY, a documentary film, so that others may benefit from her experience.
With our first screenings of SUE’S STORY we’ve seen its power to spark public discourse and inspire social change in the form of:
- Greater awareness and understanding of LBD, less stigma associated with dementia
- R&D funding targeting LBD
- Sustainable community-based support services for families living with LBD
Impact & Engagement
The Sue’s Story Project is based on a flexible model for impact and engagement that has been used successfully by other filmmakers committed to social change. We partner with other individuals and organizations to screen the film, followed by a Q&A with experts. Our goal is to empower the audience with connections and resources.
Together, we can #DisruptDementia
Sue and Chuck Berghoff met and married during the 1980s while both were working in high tech. Over the years they’ve built successful careers, and enjoyed time with family, which includes three sons, their wives, and ten grandchildren. The Berghoffs are frequently in the company of long-time friends who share hobbies and community service interests. They count weekends in the Sierra Mountains among their favorite traditions.
When introducing each other to new acquaintances at parties, more often than not they’ll say, “I want you to meet my spouse and best friend.” Together, they are fully committed to The Sue’s Story Project and its mission to increase awareness, caregiver support services, and funding for research to find a cure for Lewy Body Dementia.
Sue devoted eight years as an instructor in the Department of Linguistics and Language Development at San José State University. Prior to that, her high tech career included work as a Systems Consultant at Gateway Computers, Sr. Systems Manager at Cisco Systems, Director HR Systems at 3Com Corporation, Client Services Manager at Learning International, Director Customer Support at Prism Solutions, VP Customer Support at Walker Interactive Systems, Franchise Owner with Norrell Services, and various IT and HR management positions at Intel Corporation. Sue earned a Bachelor’s Degree in Latin with a teaching minor in English from UC Berkeley. Sue is an active member of the American Association of University Women. Over the years she has enjoyed performing with the Sweet Adelines. Sue enjoys piano, dancing, gardening, time with friends, and visiting with her grandchildren.
Chuck is the founder and CEO of OptoElectronix. He has held engineering, manufacturing, marketing, sales and general management positions, including: Intel engineering and marketing management, marketing/sales for LCD startups Ladcor and Supertex, GM/VP of Siemens OptoElectronics Division, Entrepreneur-in-Residence at Summit Partners, and CEO of Summit Microelectronics (acquired by Qualcomm). Chuck earned his Bachelor of Science degree in Electrical Engineering and Pre-med at the University of Minnesota. His community service includes roles as Board President of the Foothill-De Anza Community College District Foundation; Board President of Loaves & Fishes, Santa Clara County; Morgan Hill Rotary Club Director of Youth Services; Rotary International Project Leader for the Orkeeswa Secondary school in Tanzania; and Co-Fundraising Chair for the St. John XXIII Catholic High School start up. In his spare time Chuck enjoys motorcycle touring and playing harmonica in a bluegrass band.
Geoffrey A. Kerchner, MD, PhD
Senior Medical Director at Genentech, Inc.
Adjunct Clinical Associate Professor of Neurology & Neurological Science
Dr. Geoffrey Kerchner is a neurologist and neuroscientist, with expertise in Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), and other neurodegenerative illnesses. He leads the clinical development of neuroscience molecules at Genentech, and is an active clinician at the Stanford Center for Memory Disorders. Dr. Kerchner recently completed a term as a board member of Northern California and Nevada Chapters of the Alzheimer’s Association. He graduated summa cum laude from Harvard college, completed a MD/PhD program at Washington University School of Medicine, and pursued clinical training at the University of California, San Francisco.
Kathleen Poston, MD, MS
Associate Professor of Neurology
Co-Director, Lewy Body Dementia Research Center of Excellence
Dr. Kathleen Poston is Associate Professor of Neurology at Stanford University. She completed her Movement Disorders fellowship training at Columbia University and a post-doctoral research fellowship at the Feinstein Institute, joining the Stanford faculty in 2009. In addition to LBD RCOE Co-Director, she is the Pacific Udall Center Clinical Core Leader at Stanford and the Clinical Core Co-Leader at ADRC. Dr. Poston’s research lab is focused on understanding the cognitive and other non-motor impairments that develop in patients with Lewy body pathology. With this, the bulk of her clinical practice is caring for parkinsonian patients with cognitive impairments and, for her research studies, she has recruited over 200 parkinsonian patients with a wide range of memory impairments (PD with mild cognitive impairment, PD dementia, and LBD).
Founder, CEO and Board Member
Brain Support Network
Robin Riddle learned about neurodegenerative decline when her late father was diagnosed with Progressive Supranuclear Palsy (PSP) in 2004. She and three other caregivers started the San Francisco Bay Area PSP Support Group, which expanded its support to include MSA, CBD, and LBD and was renamed the Brain Support Network in 2005. After her father’s passing, Riddle organized the donation of his brain to the Mayo Clinic. The PSP Genetics Study Group, including scientists from Mayo, published a landmark study that used her father’s brain tissue to identify new genes linked to PSP. (Nature Genetics, 2011). Previously, Riddle was a high tech marketing professional working with companies including Covad, Unisys, and NetGravity. She holds BA and MA degrees from Stanford and an MBA from the University of Pennsylvania Wharton Business School.
Dr. Elena Call
Movement Disorders Specialist
Kaiser Permanente – San Jose Medical Center
Dr. Elena Call joind Kaiser Permanente Neurology Department at Redwood City and Santa Clara as a Movement Disorders Specialist in 2017. Dr. Call graduated from Stanford University School of Medicine in 2012 and completed her medical internship at California Pacific Medical Center in San Francisco in 2013. She completed her residency in Adult Neurology in 2016 and fellowship in Movement Disorders in 2017, both at Stanford University Medical Center. Dr. Call specializes in the care of a variety of movement disorders including Parkinson’s disease, atypical forms of parkinsonism, essential tremor, dystonia, Huntington’s disease, chorea, myoclonus, and functional movement disorders. She also has expertise in evaluation of patients for deep brain stimulation surgery (DBS) and post-surgical programming and care. She values individualized care and helps patients optimize their quality of life. Her interests include global health, social justice and the healthcare of underserved communities with prior experiences in central California, Ghana, and South Africa.