Lewy Body Dementia Research Center of Excellence
We are proud to announce the Lewy Body Dementia (LBD) Research Center of Excellence (RCOE) at Stanford University! In December 2017 researchers from across the country joined in the first-ever comprehensive network of research centers to conduct LBD clinical trials, provide community outreach, and expand professional continuing medical education. Representing 24 of medicine’s most prestigious academic medical research centers, these Research Centers of Excellence will help to streamline and standardize LBD science while connecting patients and families with the latest opportunities to participate in LBD clinical trials.
LBD Research Center of Excellence Directors
Kathleen Poston, MD, MS
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 ADRC Clinical Core Co-Leader. 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).
Sharon Sha, MD
Dr. Sharon Sha is a Clinical Associate Professor at Stanford University. She completed her Behavioral Neurology fellowship training at the UCSF Memory and Aging Center and joined the Stanford Faculty in 2013. In addition to LBD RCOE Co-Director, she is the Medical Director of the Stanford Neuroscience Clinical Trials Group, Co-Director of the Huntington’s disease and Ataxia Clinic, clinical core co-leader of the Stanford ADRC, the founding Director of the Stanford Behavioral Neurology Fellowship and leads the clinical trials for the Memory Disorders division. The majority of her clinical and research time is devoted to caring for patients with behavioral neurodegenerative disorders, finding treatments for them, and training the next generation to do the same.
LBD Research Center of Excellence at Stanford University
The Research Center of Excellence is located in the Stanford University Department of Neurology & Neurological Sciences, as part of the Division of Memory Disorders and the Division of Movement Disorders, which have rapidly grown into world-leading programs that are highly integrated and uniquely collaborative. Our Center includes both Memory disorders and Movement disorders Physicians, Neuropsychologists, a Psychiatrist, Nurse coordinators, Social Worker, Genetics counselor, and Physical/Occupational/Speech Therapists.
Highlights of our integrated Center include:
The Stanford Alzheimer’s disease Research Center (ADRC) started at Stanford in 2015. Our ADRC is the only national Center with a dual focus on cognitive impairments due to Alzheimer’s and Lewy body pathologies. We are actively recruiting patients with Lewy Body Dementia (LBD), Alzheimer’s disease (AD), Parkinson’s disease (PD), and healthy adults.
The Pacific Udall Center (PUC) moved to Stanford in 2016. The PUC focuses on the underlying genetic and mechanistic causes for cognitive impairments in PD. We are actively recruiting people with Parkinson’s disease, both with and without cognitive and memory problems.
The Poston Lab conducts translational research that bridges basic science with patient care. We study biological biomarkers, imaging biomarkers, and clinical biomarkers to understand the neural underpinnings of dementia and cognitive impairments in people with Lewy Body dementia (included Parkinson’s disease dementia and Dementia with Lewy Bodies.
What is Lewy Body Dementia (LBD)?
Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. LBD is the second most common neurodegenerative cause of dementia, after Alzheimer’s disease.
Is LBD different from other causes of dementia?
Diagnosing LBD can be extremely difficult. Patients can present with problems in movement, cognition/memory, or behavior. Therefore, LBD can be difficult to distinguish from other neurodegenerative diseases, like Alzheimer’s disease and Parkinson’s disease. Confusing the matter further, the terminology used for these different disorders can overlap. In general, there are two types of LBD – dementia with Lewy Bodies (often abbreviated DLB) and Parkinson’s disease dementia. The earliest signs of these two diseases differ but reflect the same biological changes in the brain. Over time, people with dementia with Lewy bodies or Parkinson’s disease dementia may develop similar symptoms.
Who is affected by LBD?
LBD affects more than 1 million individuals in the United States. LBD typically begins at age 50 or older, although sometimes younger people have it. LBD appears to affect slightly more men than women. LBD is a progressive disease, meaning symptoms start slowly and worsen over time. However, how quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.
What are Lewy Bodies?
Lewy bodies are named for Dr. Friederich Lewy, a German neurologist. In 1912, he discovered abnormal protein deposits that disrupt the brain’s normal functioning in people with Parkinson’s disease. These abnormal deposits are now called “Lewy bodies.”
Lewy bodies are made of a protein called alpha-synuclein. In the healthy brain, alpha-synuclein plays a number of important roles in brain nerve cells, especially at synapses, where nerve cells communicate with each other. In LBD, alpha-synuclein forms into clumps inside neurons. This process causes neurons to work less effectively and, eventually, to die. The activities of brain chemicals important to brain function are also affected. The result is widespread damage to certain parts of the brain and a decline in abilities affected by those brain regions.
Lewy Body Clinical Trials
The expansive Stanford Neuroscience Clinical Trials Program, under the direction of Dr. Sharon Sha who serves as Medical Director, includes clinical trials related to Neurology, Neurosurgery, and Neuroradiology. All of these clinical and research activities are on site at our new state-of-the-art Stanford Neuroscience Health Center (SNHC) where participants can obtain brain imaging (PET, MRI, CT), treatment infusions, lab tests, cognitive testing, and neurological evaluations. Our clinical trials are expanding and have approximately 100-200 clinical trials ongoing at any given time.
Want more information?
Making a Donation
Support Stanford researchers in their efforts to revolutionize treatment and research for patients with LBD.
A gift to the Poston - LBD Research Fund will support Lewy Body Dementia research and clinical care.
If you would like to make a donation for this purpose, please make your check payable to Stanford University and enclose a letter stating: "the donation is a gift to be used for Poston - LBD Research Fund"
Please mail donations to:
P.O. Box 20466
Stanford, CA 94309
You may also make an online gift here. Please indicate in the special instructions/other designation box that the gift is to support the
Poston - LBD Research Fund.
Stanford University is a non-profit organization and gifts are tax deductible.
Lewy Body Dementia Resources
Winner of the Poppy Jasper 2018 International Film Festival Audience Choice for Best Documentary. 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.
Featuring Dr. Kathleen Poston, Dr. Geoffrey Kerchner, and Dr. Elena Call.
To learn more and find information about upcoming viewing opportunities, visit The Sue’s Story Project.
Lewy Body Dementia - Best Local Resources
Bay Area LBD Caregiver Support Group has caregiver-only support group meetings on a Sunday evening, from 5-7pm, about every six weeks at a San Francisco Bay Area restaurant in San Mateo, CA. An email list for updates on LBD research and resources is available for Northern Californians and Central Californians coping with DLB and PDD. Plus Brain Support Network helps LBD group members donate a loved one's brain for research. Contact group leader Robin Riddle by phone 650-814-0848 or email to be added to LBD email list or for meeting schedule.
Belmont, Daly City, Los Altos, and Menlo Park Parkinson's Caregiver Support Groups, organized by Stanford University. These caregiver-only support group meetings are held on weekdays, generally from noon to 2pm, once a month. While these groups are focused on caregivers for those with Parkinson's Disease (PD), many caregivers are also coping with dementia in the context of PD. Visit the Stanford Parkinson's webpage of PD caregiver-only support group meetings to learn the contact info for the group leaders.
Gold River Lewy Body Support Group has caregiver-only support group meetings on the second Thursday of each month, from 10-11:30am at Eskaton Lodge in Gold River, CA. Contact group facilitator Denise Davis by phone 916-930-9080 or email for meeting information.
North Bay Lewy Body Dementia Support Group has caregiver-only support group meetings on the second Tuesday of each month, from 4:30-6pm at the Alzheimer's Association office in Santa Rosa, CA. Contact group facilitators Helen Medsger or Carrie Healy, LCSW by email for meeting information.
Lewy Body Dementia - Best National Resources
- list of "Top Resources" on Lewy body dementia (LBD)
- LBD blog, including posts with webinar notes and important LBD research
- email list for LBD caregivers
- brain donation for those diagnosed with Lewy body dementia around the US
Lewy Body Dementia Association, based in Georgia.
Contact: phone 404-935-6444, tollfree caregiver support hotline
- downloadable publications on Lewy Body Dementia for those with LBD and their families
- archived recordings of webinars and interviews
- tollfree support hotline for LBD caregivers
- downloadable publications for healthcare professionals, including information on emergency room treatment of psychosis
For more information please contact:
Robin Riddle, APDA Coordinator
The LBD RCOE are sponsored by the Lewy Body Dementia Association