Carrie Milliard joined the FTD Disorders Registry team in July 2023 as Director. She earned a Masters in Genetic Counseling at the University of Cincinnati and is a certified Genetic Counselor and Clinical Research Coordinator. In 2023, Carrie also obtained a certificate in Project Management from Cornell University. Carrie brings more than two decades of clinical research experience gained working in academic, regulatory, and industry settings. A major focus of her past work involved supporting research initiatives to advance therapeutic development for rare genetic diseases including cystic fibrosis and X-linked hypohidrotic ectodermal dysplasia. Most recently, Carrie led clinical research operations at a genetic testing laboratory supporting internal and external research collaborations, data dissemination, and new product development.
As the FTD Disorders Registry Director, Carrie is responsible for leadership, strategy and overall management of the Registry. She will work closely with the Registry President and Registry staff to develop and maintain a Registry that engages and empowers the FTD community, researchers, and Registry partners to facilitate and advance research into the spectrum of FTD disorders.
Lakecia Vincent joined the FTD Disorders Registry team in January 2020 as Registry Manager. She earned a Master of Public Health from Walden University and a Master Certified Health Education Specialist from the National Commission for Health Education Credentialing. She is a dedicated public health professional with 10 years of experience in program design, implementation, health promotion and education. Her experiences have focused on intersecting public health education and clinical research to enhance and impact individuals across the continuum of health. Prior to joining the Registry staff, Lakecia developed clinical education programs to drive engagement and activate populations to better manage their health. As a Research Associate, she managed community-based behavioral interventions that addressed health inequities in rural communities.
As Registry Manager, Lakecia is responsible for supporting the strategic development, implementation, and daily operations of the Registry. Her primary focus is to provide hands-on administration including online patient enrollment, account validation, and information requests. She works directly with Registry participants and facilitates access to advocacy organizations and FTD resources. Lakecia supports outreach efforts by helping to craft materials for varied media channels and content for the Registry website. She also assists with online survey administration and preparing materials for Institutional Review Board submission.
PROJECT MANAGER/ALLFTD LIAISON
Sweatha Reddy joined the FTD Disorders Registry team in January 2020 as Project Manager. She earned a B.S. in Biology from Creighton University and has more than five years of project management experience. She has worked within healthcare identifying gaps in clinical care, designing and executing research studies, and analyzing data to develop recommendations to improve patient outcomes. In addition, she has served as an advocate for the patient’s voice and experience to provide equitable and quality healthcare.
As Project Manager, Sweatha serves as the liaison between the FTD Disorders Registry and the ALLFTD Study — a comprehensive study to better understand most varieties of frontotemporal lobar degeneration. In this role, she is able to combine her experience and passion for patient advocacy to help advance the science for FTD disorders.
IT SYSTEM ADMINISTRATOR
Robert Reinecker joined the FTD Disorders Registry team in November 2021 as the IT System Administrator. He earned a B.A. degree from The College of New Jersey. He held many positions working in the insurance industry including IT Trainer, Intranet Web Developer, Network Administrator, Manager, and for the past 15 years, Full Stack Developer.
In his role as the IT System Administrator, he is responsible for managing the Registry's hardware, software, and application integrations while monitoring overall system performance to optimize data management and integrity.
MANAGING PARTNER OF THE FTD DISORDERS REGISTRY
OFFICERS OF THE FTD DISORDERS REGISTRY
AFTD Chief Executive Officer: Susan Dickinson, MSGC
As CEO of AFTD, Susan has ultimate responsibility for AFTD’s management of the Registry. She has led AFTD as CEO since 2008 and served on the Management Committee of the FTD Disorders Registry from its inception in 2016 to the management transition in 2020 with AFTD as the new managing member.
President & Interim Director: Penny Dacks, PhD
As FTDDR President, Dr. Dacks oversees the FTD Disorders Registry and has responsibility for its sustainability and its external strategic relationships and partnerships. She also serves as AFTD’s Senior Director of Scientific Initiatives, where she leads strategy for AFTD’s research initiatives. She brings a decade of experience in biomedical nonprofit management, most recently as Associate Executive Director, Programs at the American Epilepsy Society, overseeing mission-related programs in research, medical education, and clinical activities. Penny trained in neuroscience at the University of Arizona and the Icahn School of Medicine at Mount Sinai.
Chief Operating Officer: Mitch Appleson, CPA, MBA
As FTDDR Chief Operating Officer, Mitch brings 15-plus years of knowledge and experience in healthcare administration to help cultivate the Registry's growth. He has served as AFTD COO since March 2022. Mitch has an M.B.A. from St. Joseph’s University and a B.S. in Accounting from Yeshiva University. He earned his CPA license while working at Ernst & Young.
Chief Financial Officer: Christine Stevens, MBA
As FTDDR CFO, Christine is responsible for the design and oversight of appropriate financial controls, cash and investment management, engagement and management of auditors, and the annual audit and 990 preparation. In addition, she advises the Registry President and Director on issues such as employee benefits and HR policies, risk management, budgeting, vendor contracts, and financial compliance management. Christine has served as AFTD Chief Financial Officer since 2017. She holds an M.B.A. from Northeastern University and a B.A. in Economics from St. Lawrence University. She earned her CPA license working for PricewaterhouseCoopers.
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, and a fellowship in Behavioral Neurology at UCSF. He 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, along with Dr. Brad Boeve (Mayo) and Dr. Howard Rosen (UCSF), is a lead investigator for the NIH-funded ALLFTD Study.
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. He is a Professor and Chair of Behavioral Neurology at Mayo Clinic. Dr. Boeve, along with Dr. Adam Boxer (UCSF) and Dr. Howard Rosen (UCSF), is a lead investigator for the NIH-funded ALLFTD Study.
Dr. Lawrence I. 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 Emeritus of Neurology at Rutgers Robert Wood Johnson Medical School and Director of the department’s Division of Movement Disorders.
Dr. David Knopman, Mayo Clinic, Rochester, MN
Dr. Knopman received his MD 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 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 (API).
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 an 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.