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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 Master of Science degree in Biology (Genetic Counseling) from the University of North Texas and her Ph.D. 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 manages 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 assists clinicians, other researchers, and organizations interested in using the Registry to answer important research questions and to support clinical trials. Dianna is the point of contact between potential users of the Registry and our Scientific Advisory Board of medical science experts who determine access to the data.

MANAGEMENT COMMITTEE OF 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.  

Rosa Canet-Avilés, PhD (President). Rosa joined The Association for Frontotemporal Degeneration as its first Senior Director of Scientific Initiatives in January 2020 to oversee scientific operations and strategy development. Previously, Rosa served as the Director of Neuroscience Research Partnerships at the Foundation for the National Institutes of Health (FNIH) where she developed and managed the Neuroscience Research Partnership portfolio, which included the Accelerating Medicines Partnership (AMP) for Alzheimer’s Disease, AMP Parkinson’s Disease, AMP Schizophrenia, the Alzheimer’s Disease Neuroimaging Initiative 3, and the Biomarkers Consortium Neuroscience Steering Committee. Rosa received her Ph.D. from Leeds University, UK, and her bachelor's degree in Chemistry from the Universitat de Barcelona (Catalonia), Spain.

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 Chief Scientific Officer 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 Ph.D. 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 Chief Executive Officer of The Association for Frontotemporal Degeneration, which she joined 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 members. 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 of experience facilitating communications among lay, scientific, and medical communities for the benefit of patients, their families, and professionals. She holds a Master of Science in genetic counseling from Arcadia University and a Bachelor of Arts in biology and psychology from Swarthmore College.

Diana Shineman, PhD. Diana is the Vice President of Research and Medical Programs at the Tourette Association of America where she oversees the programs, activities, and staff working to advance understanding and develop therapies for Tourette & Tic Disorders. Diana has experience both as a researcher and in the nonprofit sector. She spent nine years at the Alzheimer’s Drug Discovery Foundation directing their drug discovery, development grant programs, and strategic initiatives. She earned a Bachelor of Arts in biology with a nutrition concentration from Cornell University and a Ph.D. in cell and molecular biology from the University of Pennsylvania.  

Jeremy J. Smith. Jeremy is the president of the Rainwater Charitable Foundation, a private family foundation focused on education and medical research. Prior to joining Rainwater, Jeremy worked in management consulting at McKinsey & Company and DenuoSource, LLC. He serves as a board member at the Dallas Foundation, Read Fort Worth and Commit Dallas.  Jeremy is a graduate of the Harvard Business School and the Harvard Divinity School. He received his Bachelor's of Science in engineering from the University of Arkansas.

Jary Larsen, PhD (Past 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.

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 M.D. and Ph.D. 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, and a 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 M.D. 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 the 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 M.D. 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 M.D. 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 M.D. degree from the 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 Ph.D. 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 (M.D.) 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 Master of Health Sciences 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.