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Meet Our Team

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Registry Director

Dianna K.H. Wheaton, MS, PhD, CHES

Dr. Wheaton joined the field of FTD research as Director of the FTD Disorders Registry in January, 2016. She obtained her MS degree in Biology (Genetic Counseling) from the University of North Texas; and her PhD in Health Studies (Community/Population Health) from the Texas Woman’s University. Dianna served as the first Director of the Southwest Eye Registry, guiding it from its early days to a registry which has supported a number of clinical trials. She has more than 20 years of clinical science research experience and genetic counseling for patients and at-risk family members.

As Registry Director, Dianna will manage the daily operations of the FTD Disorders Registry, working directly with persons diagnosed with FTD and their families, and leading outreach efforts to the lay and health professional communities. She will assist clinicians, other researchers and organizations interested in using the registry to answer important research questions and to support clinical trials. Dianna will be the point of contact between potential users of the Registry and our Scientific Advisory Board of medical science experts who will determine access to the data.

 

 

the ftd disorders registry llc

The Management Committee of the Registry LLC is composed of volunteers who provide links to our founding organizations, funding sources, and the research community.  

Jary Larsen, PhD (President). Jary, whose brother was diagnosed with FTD in 2006, served on the AFTD Board of Directors from 2010-2017 and also served as the Board Chair from 2013-2016. He is a licensed neuropsychologist with extensive experience with both clinical assessments and research design. Jary currently is affiliated with the Neuropsychology Service/Neurosurgery Service at the University of California, San Francisco/Zuckerberg San Francisco General Hospital (UCSF/ZSFG) and the Cognitive Neuropsychology and Electrophysiology (CNE) Laboratory at VA Northern California, where he has also served as the Chair of the Institutional Review Board (human research ethics board) since 2012.

Rodney Pearlman, PhD (Treasurer). Rodney is the President of The Bluefield Project to Cure Frontotemporal Dementia. Prior to joining The Bluefield Project, Dr. Pearlman co-founded and served as the CEO of Saegis Pharmaceuticals. Rodney has held other leadership positions in a number of biotechnology companies including Genentech and was on the faculty at the University of Texas, Austin.

Laura Mitic, PhD (Secretary). Laura is the Director of Translational Research at The Bluefield Project to Cure Frontotemporal Dementia. She works with clinicians and researchers to advance therapeutic development for progranulin-deficient FTD. She received her PhD in cell biology from Yale University and completed postdoctoral training in the genetics of aging at the University of California, San Francisco.

Patrick Brannelly, MBA. Patrick became the Program Director of the Tau Consortium, a program funded by the Rainwater Charitable Foundation in 2014.  He works with an international group of researchers to investigate the causes, progression, and potential treatments of PSP and other tau-related disorders. 

Susan L-J Dickinson, MS, CGC. Susan is the CEO of The Association for Frontotemporal Degeneration, she joined AFTD in February 2008. Under her leadership, AFTD has expanded dramatically in scale and impact, from a $400,000 organization with a part-time staff of three, to a $3.5 million organization with 20 full-time staff. During her tenure AFTD has expanded programs to meet and advocate for the needs of FTD families, and invested in specific strategies to advance FTD research and drug development, including a multi-year, $5 million initiative to identify biomarkers for FTD and a $10 million program to stimulate FTD clinical trials. Susan is a certified genetic counselor with more than 25 years’ experience facilitating communications among lay, scientific and medical communities for the benefit of patients, their families and professionals. She holds an MS in genetic counseling from Arcadia University and a BA in biology and psychology from Swarthmore College.

Scientific Advisory Board of the FTD Disorders Registry 

Our Advisory Board is composed of clinician and researcher volunteers from the FTD and dementia community. Each volunteer member is a recognized leader in the fields of FTD disorders, dementia, clinical care, patient registries and clinical trials  

Dr. Adam Boxer, University of California, San Francisco, CA (Chair)

Dr. Boxer received his MD and PhD degrees at New York University Medical Center. He completed an internship in Internal Medicine at California Pacific Medical Center, a residency in Neurology at Stanford University Medical Center fellowship in Behavioral Neurology at UCSF. Dr. Boxer is an Associate Professor of Neurology and directs the Alzheimer’s Disease and Frontotemporal Dementia Clinical Trials Program at the Memory and Aging Center. Dr. Boxer is the lead investigator of the NIH-funded ARTFL network.

Dr. Brad Boeve, Mayo Clinic, Rochester, MN

Dr. Boeve received his MD degree at the University of Florida. He completed an internship in Internal Medicine, his residency in Neurology and fellowships in Behavioral Neurology and Sleep Medicine at Mayo Clinic College of Medicine. Dr. Boeve is a Professor and chair of Behavioral Neurology at Mayo Clinic. Dr. Boeve and Dr. Howard Rosen (UCSF) are the co-leads of the NIH-funded LEFFTDS network.

Dr. Lawrence Golbe, Rutgers Robert Wood Johnson University Hospital, New Brunswick, NJ

Dr. Golbe received his MD degree at New York University School of Medicine. He completed his Internal Medicine residency at Hahnemann Hospital in Philadelphia before transferring into Neurology and completing his residency at NYU-Bellevue Hospital. Dr. Golbe is Professor of Neurology at Rutgers Robert Wood Johnson Medical School and Director of the department’s Division of Movement Disorders.
    
Dr. Daniel Kaufer, University of North Carolina, Chapel Hill, NC

Dr. Kaufer received his MD degree at the University of Wisconsin. He completed an internship at Montefiore University Hospital in Pittsburgh, a residency in Neurology at University of Pittsburgh, and a fellowship in Behavioral/Geriatric Neurology at the University of California at Los Angeles. He is Associate Professor of Neurology at the University of North Carolina, Division Chief of Cognitive Neurology and Memory Disorders, and Director of the UNC Memory Disorders Program.

Dr. David Knopman, Mayo Clinic, Rochester, MN

Dr. Knopman received his MD degree from University of Minnesota, Twin Cities. He completed his internship at Hennepin County Medical Center, residency in Neurology at University of Minnesota Medical School, and fellowship in Aphasia and Behavioral Neurology at Hennepin County Medical Center. Dr. Knopman is Professor of Neurology at Mayo Clinic and served as the Chair of AFTD’s Medical Advisory Council.

Dr. Jessica Langbaum, Banner/API

Dr. Langbaum received her PhD in psychiatric epidemiology from Johns Hopkins University. She completed a post-doctoral research fellowship in brain imaging and Alzheimer’s disease at Banner Alzheimer’s Institute. She is a principal scientist at Banner Alzheimer’s Institute and the Associate Director of the Alzheimer’s Prevention Initiative.

Dr. Chiadi Onyike, Johns Hopkins Hospital, Baltimore, MD

Dr. Onyike received his MBBS (MD) degree from the University of Nigeria, College of Medicine. He completed a residency and fellowship in Psychiatry at Johns Hopkins University School of Medicine. He also obtained a MHS in Clinical Epidemiology from Johns Hopkins Bloomberg School of Public Health. He is an Associate Professor of Psychiatry and Behavioral Science at John Hopkins Hospital and Director of the Frontotemporal Dementia Program.