Holloway Summit

Risk Factors for FTD

January 22-24, 2025

Mandarin Oriental, Miami, FL

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A Message from Kristin Holloway

On behalf of AFTD’s Board and staff, thank you for attending the 2025 Holloway Summit. Over the next two days, you and other similarly brilliant FTD researchers will talk about risk factors in FTD – what we know about them today, and what we hope to learn tomorrow. The better we understand what causes FTD, the more likely we are to see future cases dwindle to a small few. This can happen, and it can happen in our lifetimes.

If you were at a previous Holloway Summit, you know this cause is deeply personal to me. My husband, Lee Holloway, was diagnosed with FTD in 2017. Lee and I met when we both worked at Cloudflare, the internet-security company he had co-founded. I worked in communications, while Lee was – as described by a WIRED magazine profile – Cloudflare’s “resident genius, the guy who could focus for hours, code pouring from his fingertips.” Thanks to Lee’s genius, Cloudflare grew into perhaps the world’s most trusted name in cybersecurity.

Like so many others who love someone with FTD, I have devoted significant time and energy to ending this disease, by both funding crucial FTD research and facilitating groundbreaking conversations among thought leaders in the neurodegeneration space. I’ve seen firsthand that we are closer than ever to leaving our mark on FTD science, and that viable treatments are on the horizon.

Of course, those treatments can only become a reality through collaboration, innovation, and hard, unglamorous scientific work – in short, the work you do every day. Thank you all, again, for being here. I’ve been proud to support the Holloway Summit since it began in 2022. And I know that, together, we are paving a path toward a future free of FTD.

"The more we learn about FTD, the sooner we can make it a thing of the past. The Holloway Summit is designed specifically to foster collaboration among FTD thought leaders to help pave the path forward to treatments and a cure."

A Message from Susan Dickinson and Kimberly Pang Torres

Welcome to the Holloway Summit. We are so pleased that you have chosen to join us here in Miami. The next two days will be filled with important conversations and informative talks from some of the best minds currently researching FTD and related neurodegenerative diseases. As someone working on the frontlines of risk-factor research, you – and the expertise you bring – will be invaluable throughout the Summit. AFTD is proud to stand alongside you as we work collaboratively to end this disease.

Why do people get FTD? This simple question is at the heart of the 2025 Holloway Summit. We know that genetics contribute significantly to the development of FTD, but what might be at play in seemingly sporadic cases? This year’s Holloway Summit – made possible, as always, thanks to the generosity of AFTD Board member Kristin Holloway and the Holloway Family Fund – will delve into the full range of risk factors for FTD.

Over the course of the meeting we will hear much about FTD genetics, but also about environmental risk factors, preexisting conditions, traumatic brain injury, and how one’s diet, sleep, and physical activity may all contribute to FTD risk. We’ll also look at the intersection of FTD risk factors and clinical-trial design, and we will discuss the future of research into FTD’s potential causes, both endogenous and exogenous.

Every day, members of AFTD staff speak with those diagnosed with FTD, as well as their family members. And every day, we learn anew how profoundly our community wants to help build a world free of this disease. Having a complete and scientifically verified accounting of FTD’s risk factors will fuel earlier diagnosis and even empower people to forestall disease onset. This is the future we all seek. You are helping us pave the path forward.

Susan L-J Dickinson, MSGC
AFTD Chief Executive Officer

Kimberly Pang Torres
AFTD Board Chair

Summit Leadership

Summit Host

Kristin Holloway is the host and supporter of the Holloway Summit and a member of the AFTD Board. She is a communications professional with more than 10 years of experience as a strategist for high-growth technology companies. In addition to having experience in technology public relations, her expertise includes media and analyst relations, campaign management, strategic and crisis communications, project management and technical content creation. In April 2017, her husband Lee Holloway, a gifted technology pioneer who co-founded the web security and performance company Cloudflare, was diagnosed with behavioral variant FTD. To honor Lee’s legacy, Kristin and the Holloway family established The Holloway Fund for Help and Hope at AFTD in 2019. Kristin is passionate about raising funds to help others as they navigate their FTD journey, as well as supporting cutting-edge research to advance treatments.

Kaitlin Casaletto, PhD, is a neuropsychologist and Associate Professor at the UCSF Memory and Aging Center passionate about understanding resilience to brain aging and neurodegeneration. She obtained her PhD in Clinical Psychology from the UCSD/SDSU Joint Doctoral Program and her fellowship in Clinical Neuropsychology at the UCSF Memory and Aging Center where she went on to join faculty.

Her research program aims to prevent cognitive decline by identifying the biological and behavioral drivers (especially sex/gender) of cognitive resilience with age. Her work incorporates fluid biomarkers, neuropathology indicators, and digital health capture of behavior to deeply understand human brain aging and disease.

Chiadi Onyike, MD, MHS, Associate Professor of Psychiatry and Behavioral Sciences at Johns Hopkins University, is a neuropsychiatrist and clinical epidemiologist engaged in clinical care and research has focused on frontotemporal dementias, and on other neurodegenerative disorders arising in youth through middle-life, and later.

He is a principal investigator and co-investigator of research projects supported by NIH, foundation, industry and philanthropy grants. He is chair-elect of the Association for Frontotemporal Degeneration Medical Advisory Council, and a member of the Scientific Advisory Boards of the Tau Consortium and the FTD Disorders Registry. He has served on NIH Alzheimer’s Disease and Related Dementias committees, the NIH Amyotrophic Lateral Sclerosis Strategic Planning Working Group, and the FDA Advisory Committee for Central and Peripheral Nervous System Drugs. He was an inaugural director of the Johns Hopkins Research Center of Excellence for Lewy Body Dementia and serves on several LBDA clinical workgroups.

Dr. Onyike received his Medical Degree from the University of Nigeria, and a graduate degree in Clinical Epidemiology from the Johns Hopkins Bloomberg School of Public Health. He completed psychiatry training at the Johns Hopkins School of Medicine, and research training in Psychiatric Epidemiology at the Johns Hopkins Bloomberg School of Public Health, and Cellular Neuroscience at the University of Maryland at Baltimore.

Speaker Bios

Juliana Acosta-Uribe, MD, PhD | UCSB

Dr. Acosta-Uribe's Bio

Dr. Juliana Acosta-Uribe is an Assistant Researcher at the Neuroscience Research Institute, University of California, Santa Barbara, and serves as the Neurogenetic Research Coordinator for the Grupo de Neurociencias de Antioquia at Universidad de Antioquia, Colombia. With a background in Molecular Cellular and Developmental Biology, complemented by her medical degree, Dr. Acosta-Uribe has dedicated over a decade to advancing the field of neurogenetics. Her expertise spans the intersections of clinical and population genetics, focusing on neurodegenerative diseases such as Alzheimer’s disease and related dementias (ADRD).

Dr. Acosta-Uribe's work has significantly contributed to understanding the genotype-phenotype correlations and the impact of multi-ancestral genetic risk factors for dementia in admixed populations. Her research includes leading genetic analyses of Latin-American cohorts with ADRD and exploring the demographic influence on the genesis of such illnesses. Her efforts have highlighted the role of founder effects the landscape of rare mutations, offering insights into the genetic origins of familial neurodegenerative conditions.

Beyond her research, Dr. Acosta-Uribe is an advocate for genomic literacy, leading training programs in computational genetics to help Latin American researchers engage more deeply with genetic data analysis. Her mentorship extends beyond her research, encouraging diversity and inclusion within the global scientific community. Through her work and advocacy, Dr. Acosta-Uribe plays a key role in expanding the field of neurogenetics and supporting a more diverse scientific community.

Miguel Arce Renteria, PhD | Columbia University Medical Center

Dr. Arce Renteria's Bio

Miguel Arce Rentería, PhD, is an Assistant Professor of Neuropsychology at the Taub Institute for Research on Alzheimer’s Disease and the Aging Brain and the Department of Neurology at the Columbia University Medical Center. His research focuses on determining factors of reserve and resilience to cognitive aging and Alzheimer’s disease and related dementias (ADRD) among racial/ethnic minorities both within the United States and abroad with an emphasis on understanding the role of bilingualism. Dr. Arce is also involved in outreach efforts to engage with diverse communities in ADRD research. He is the director of the Outreach, Recruitment and Engagement (ORE) Core for Columbia University’s Alzheimer’s Disease Research Center (ADRC) and a member of the ORE Core National Steering Committee for the National Alzheimer’s Coordinating Center (NACC).

Jalayne Arias, JD, MA | Georgia State University

Professor Arias' Bio

Jalayne J. Arias is an Associate Professor in Health Policy & Behavioral Sciences in the School of Public Health at Georgia State University. Prof. Arias' research focuses on the policy, legal, and ethical questions that arise in Alzheimer's disease and related dementias, aging, and neurosciences.

Professor Arias is a multidisciplinary researcher and scholar leading studies at the intersection of science, health care, policy, and law. Her research portfolio addresses critical policy, social, legal, and ethical challenges for older adults and neurosciences. Her prior and ongoing studies have identified employment and insurance discrimination based on emerging techniques to identify risk for Alzheimer’s disease, evaluated genetic data-sharing guidelines in research, considered the relevance of return of research results for recruitment and enrollment, analyzed private payers’ coverage policies for genetic testing, examined challenges to financing long-term care, identified policy needs within the criminal justice system in managing and caring for older adults, and characterized financial and legal decision-making in young-onset dementias.

Breton Asken, PhD, ATC | University of Florida

Dr. Asken's Bio

Dr. Breton Asken is an Assistant Professor in the Department of Clinical and Health Psychology at the University of Florida and a member of the Clinical Core of the 1Florida Alzheimer’s Disease Research Center. He earned his doctorate in Clinical Psychology, specializing in neuropsychology, from the University of Florida and completed his clinical internship in neuropsychology at Brown University. He then completed a postdoctoral fellowship in neuropsychology at the UCSF Memory and Aging Center. His research integrates multimodal biomarkers with cognitive and behavioral evaluations to study the complex associations between neuropathological changes and clinical phenotypes among patients with Alzheimer’s disease and related dementias, including the spectrum of FTD. A major focus of this work is studying the role that lifetime head trauma plays later-life neurodegenerative disease, specifically hippocampal and limbic network vulnerability to developing neuropathological changes with aging. Dr. Asken is also an active clinical neuropsychologist in the UF Memory Disorders Clinic and specializes in evaluation of patients with suspected neurodegenerative disease.

Arabella Bouzigues, PhD | Paris Brain Institute

Dr. Bouzigues' Bio

Arabella is currently in the final year of her PhD at the Paris Brain Institute. The focus of her research is investigating novel multimodal imaging biomarkers to improve the early detection, differential diagnosis and monitoring of FTD. Arabella has been the lead central coordinator for the Genetic FTD Initiative (GENFI), a multicenter cohort study of presymptomatic genetic FTD, since 2020, based at University College London. She oversees the coordination of the international sites across Europe and Canada to ensure data harmonisation and leads new research and industry collaborative initiatives. She is also the incoming Programs Chair for Alzheimer’s Association Professional Interest Area in FTD.

Daniel Brickman, PhD | Brickman Biotech Consulting

Dr. Brickman's Bio

Daniel Brickman is a community advocate for the needs of people at genetic risk for FTD/ALS and freelance biotech strategy consultant. As a community advocate, he has co-authored the first guidance publication for people at genetic risk of ALS/FTD, co-authored a poster at ISFTD for on the risks of informants in people at genetic risk of FTD, and has presented on the lack of evidence that exercise increases the risk of ALS/FTD for those at genetic risk. Daniel holds a PhD in social psychology and MA in statistics from the University of Michigan. After grad school, Daniel worked as a biostatistician at Bristol Myers Squibb before transitioning to clinical trial design optimization. At Genentech, he led late-stage oncology pipeline planning, overseeing a global team that supported asset strategy, new project planning, and financial valuation. After Genentech, Daniel joined Abbvie Stemcentrx, where he was the project team leader for 15+ assets between toxicology studies and end of Ph1. Most recently Daniel was the Interim Head of Biometrics at Mirati. Now as a consultant, Daniel supports biotech companies on portfolio & asset strategy with a focus on the design, optimization, and decision-making associated with clinical trials.

Penny Dacks, PhD | AFTD

Dr. Dacks' Bio

Penny Dacks, PhD is AFTD’s Senior Director of Scientific Initiatives. Dr. Dacks leads strategy for AFTD’s research programs and serves as President of the FTD Disorders Registry. Previously, she worked at the American Epilepsy Society, overseeing all mission-related programs in research, medical education, and clinical activities. Before that she spent five years at the Alzheimer’s Drug Discovery Foundation, where she led development of CognitiveVitality.org and the Aging & Alzheimer’s Prevention Program to source and evaluate potential therapies. She holds a PhD in neuroscience from the University of Arizona.

Klodian Dhana, MD, PhD | Rush University Medical Center

Dr. Dhana's Bio

Klodian Dhana, MD, PhD, is an Associate Professor at Rush University Medical Center in Chicago. Dr. Dhana received his MD from the University of Tirana in Albania, PhD from Erasmus University Medical Center in the Netherlands, and completed postdoctoral training at Harvard T.H. Chan School of Public Health in Boston. In 2018, he joined Rush University as a research faculty. At Rush University, Dr. Dhana's research centers on healthy aging and longevity, with a focus on the primary prevention of Alzheimer's disease and related dementias. Specifically, his research leverages population-based cohort studies and clinical trials—funded studies by the NIH and the Alzheimer's Association—to investigate how diet and lifestyle factors influence cognitive decline, the onset of Alzheimer's dementia, and associated brain pathologies.

Elizabeth Finger, MD | University of Western Ontario

Dr. Finger's Bio

Dr. Elizabeth Finger is a neurologist and a Professor in the Department of Clinical Neurological Sciences at Schulich School of Medicine at the University of Western Ontario, in London, Canada. She is a clinician-scientist at Robarts Research Institute and Lawson Research Institute, where her research aims to improve diagnosis and treatment of Frontotemporal Degeneration and related conditions. She is launching the GENFI-Neurodevelopmental study (GENFI-NeuroDev) of potential early genetic effects of FTD, and recently led the positive FOXY international trial of intranasal oxytocin targeting apathy symptoms in Frontotemporal Dementia.

Leah Forsberg, PhD | Mayo Clinic Rochester

Dr. Forsberg's Bio

Dr. Forsberg is an Assistant Professor of Neurology at Mayo Clinic in Rochester Minnesota. Her research interest in neurodegenerative diseases began in graduate school where she focused on the development of potential neuroprotective therapeutics. Her current research focuses on Frontotemporal Lobar Degeneration (FTLD), Lewy Body Disease (LBD), and Caregiver quality of life. Together with colleagues at the Mayo Clinic, Dr. Forsberg is involved with research projects aiming to identify biomarkers for disease onset and progression in hopes of identifying new therapeutics and eventually provide better treatment for patients and research participants. She serves on the Executive Team and co-leads the Administrative Core for the ARTFL/LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) study (U19AG63911). This study focuses on the longitudinal evaluation of those with familial or sporadic FTLD, with the aim to identify biomarkers to assist with diagnosis and clinical care for those with FTLD. Dr. Forsberg is also an active member of the FTD Prevention Initiative (FPI), which is an international group of FTD researchers and clinicians who are actively trying to further global research into FTLD. Dr. Forsberg is also involved with LBD research studies and Caregiver-focused research studies that utilize technology-based tools aimed at improving quality of life.

Sanne Franzen, MSc, PhD | Erasmus Medical Center

Dr. Franzen's Bio

Sanne Franzen, PhD, is a licensed (neuro)psychologist and postdoctoral researcher at the Erasmus Medical Center in Rotterdam, the Netherlands. She combines clinical work with her research focused on improving dementia diagnosis in culturally, linguistically, and educationally diverse populations, spearheading the development of cross-cultural cognitive tests and test batteries. She is also involved in studies examining the effect of eligibility criteria and recruitment strategies on participant diversity and on the topic of diversity and FTD. She is a member of the Board of Directors of the International Neuropsychological Society and co-founder of the European Consortium on Cross-Cultural Neuropsychology (ECCroN).

Matthew Harms, MD | Columbia University

Dr. Harms' Bio

Matthew Harms, MD is the Associate Director of the Eleanor and Lou Gehrig ALS Center at Columbia University, where his research focuses on the genetic underpinnings of ALS and ALS-spectrum disorders. He is one of the mulit-PI's of ALL ALS, which is generating a national cohort of people living with ALS or at genetic risk for developing ALS-spectrum disorders. Dr. Harms also directs Columbia's Program in Neurogenetics and the Precision Neurotherapeutics Program.

Irene Litvan, MD | UCSD

Dr. Litvan' Bio

Dr. Irene Litvan is the Tasch Endowed Chair of Parkinson Disease Research, Professor of Neurosciences, and Director of Parkinson and Other Movement Disorder Center (MDC) at the University of California San Diego (UCSD). She is a fellow of the American Neurological Association and American Academy of Neurology (AAN), past Chair of the AAN Movement Disorder Section and serves on many boards and committees. Dr. Litvan is the past Treasurer of the International Parkinson and Movement Disorder Society. She is a movement disorder specialist, behavioral neurologist, and neuroepidemiologist who has developed two movement disorders centers at the University of Louisville and UCSD, that were both designated as Parkinson Foundation Centers of Excellence. The UCSD MDC is also a CurePSP Center of Care, Research Center of Excellence in Lewy Body Dementia, and Multiple System Atrophy Center of Excellence. She has led and collaborated in international studies to evaluate, develop, and improve clinical and neuropathologic diagnostic criteria of parkinsonian and dementia disorders (PSP, CBD, MSA, DLB, PD, PD-MCI and PDD) and conducts translational and clinical therapeutic trial research to improve the lives and slow disease progression of persons with parkinsonian disorders. Dr. Litvan is Chief Editor of Frontiers in Neurology, published more than 350 peer-reviewed articles and chapters, and is senior editor of 4 books with an h-index of 108. She is ranked top 1% of most cited scientific studies worldwide (Web of Science past 5 years), received the 2018 AAN Movement Disorders Research Award, and was awarded the Honorary Membership Award by the International Parkinson and Movement Disorder Society in 2023. She mentors clinical and research fellows as well as residents and medical students.

Jose A. Luchsinger, MD MPH | Columbia University Medical Center

Dr. Luchsinger's Bio

Jose A. Luchsinger, MD MPH, Is the Robert F. Loeb Professor of Medicine and Professor of Epidemiology at the Columbia University Medical Center. He is the editor in chief of the journal Alzheimer’s Disease and Associated Disorders and has been conducting research in the prevention of Alzheimer’s disease (AD) and AD related dementias for 25 years, including observational studies and clinical trials.

Lauren Massimo, PhD, CRNP | University of Pennsylvania FTD Center

Dr. Massimo's Bio

Lauren Massimo is an Associate Professor in the School of Nursing at the University of Pennsylvania and Co-Director of the Penn Frontotemporal Degeneration Center. Dr. Massimo is a graduate of the PhD program at the University of Pennsylvania. She holds a bachelor’s degree in Nursing from The Pennsylvania State University and master’s degree as an Adult and Gerontology Nurse Practitioner from the University of Pennsylvania.

Dr. Massimo’s research focuses on identifying factors associated with resilience in neurodegenerative disease. She is currently funded by the National Institute on Aging for her work on cognitive reserve in early-onset dementia and she leads an investigation of apathy in frontotemporal degeneration (FTD). Over her twenty year-long career as a nurse practitioner in cognitive neurology, she has enjoyed the opportunity to work with many patients with neurodegenerative disease and their families. Dr. Massimo feels strongly about supporting persons living with dementia and their families through education and outreach. She has made significant contributions in the field of FTD caregiving, investigating sources of caregiver stress and testing supportive interventions to foster self-care and enhance coping.

Corey McMillan, PhD | University of Pennsylvania

Dr. McMillan's Bio

Corey McMillan is an Associate Professor of Neurology at the University of Pennsylvania where he is also a Co-Director of the Penn Frontotemporal Degeneration Center. His research program focuses on two disease spectra: Alzheimer’s disease (AD) and Primary Age-Related Tauopathy (PART) which are conditions that share common tau pathology but are differentiated by the presence or absence of amyloid pathology; and Frontotemporal Degeneration (FTD) and Amyotrophic Lateral Sclerosis (ALS) which are conditions that share common TDP-43 pathology and but present with a range of clinical syndromes. By testing biologically-grounded hypotheses with the use of novel analytic and multimodal neuroimaging (e.g., structural MRI, diffusion MRI) approaches, his lab integrates neuroimaging modalities with genomics (e.g., SNP genotypes, DNA methylation, RNA transcription) to address the biological basis of disease heterogeneity.

Manuela Neumann, Prof. Dr. | DZNE

Dr. Neumann's Bio

Manuela Neumann, M. D. is Professor of Neuropathology at the University of Tübingen, Germany, Medical Director of the Department of Neuropathology of the University Hospital, and Senior Group Leader at the German Center for Neurodegenerative Diseases.

Her research focus is to unravel the molecular pathology and underlying pathomechanisms of neurodegenerative diseases by studying human tissues and model systems. She is internationally recognized for her pioneering work on the identification and characterization of TDP-43 and FET proteins in frontotemporal dementias and amyotrophic lateral sclerosis. She has published over 200 peer-reviewed articles and has received several prestigious research awards, including the European Grand Prix from the French Foundation for Research into Alzheimer‘s and the Alzheimer Research Award from the Hans&Ilse Breuer Foundation in 2012.

Manuela Neumann serves as a member of the editorial board of Acta Neuropathology and of the Board of Directors of the International Society for Frontotemporal Dementia (ISFTD).

Ozioma Okonkwo, PhD | UW Madison

Dr. Okonkwo's Bio

Dr. Okonkwo is a Professor in the Department of Medicine at the University of Wisconsin- Madison. His research focuses on clarifying how alterations in the brain and other biomolecules place some cognitively-normal individuals on a pernicious trajectory that culminates in probable Alzheimer’s disease. In this context, Dr. Okonkwo is also interested in discovering new knowledge concerning the modulation of the link between brain changes and cognitive decline by both modifiable and non-modifiable factors. Overlaid on this research agenda are investigations of health inequities, and how such inequities exacerbate or ameliorate the impact of biomarkers on clinical phenotypes.

Emily Paolillo, PhD | UCSF, Memory and Aging Center

Dr. Paolillo's Bio

Dr. Emily Paolillo is a neuropsychologist and Assistant Professor at the UCSF Memory and Aging Center. Her research focuses on improving assessment and monitoring of real-world neurobehavioral changes associated with cognitive aging and neurodegenerative disease through the use of digital health tools, including smartphones, wearables, and in-home sensor technology. She currently leads efforts to develop and evaluate digital methods for passively capturing real-world neurobehavioral change in frontotemporal dementia, with goals to reduce burden associated with longitudinal assessment and improve our ability to continuously monitor change over time.

James Rowe, MD, PhD | University of Cambridge

Dr. Rowe's Bio

As Professor of Cognitive Neurology James studies the mechanisms and treatment of frontotemporal dementias, together with Progressive Supranuclear Palsy, corticobasal syndrome and related disorders. He trained in medical sciences and experimental psychology at Cambridge, before clinical training in Oxford and his PhD at UCL, London. After specialist training in London and Copenhagen, he returned to Cambridge where he now leads the Dementia theme of the NIHR Biomedical Research Centre, and directs the Cambridge Centre for Frontotemporal Dementia. He is Associate Director of Dementias Platform UK, and Chief Scientific Adviser to Alzheimer’s Research UK. His work brings together deep-phenotyping, brain imaging, genetics, computational modelling, pharmacology and cognitive neuroscience to understand the mechanisms of disease and individual differences, as the pathway to new treatments. He is an active clinical neurologist, which underlies his determination that research focusses on the priorities for people affected by frontotemporal dementia.

Sudha Seshadri, MD | University of Texas Health Sciences Center, San Antonio

Dr. Seshadri’s Bio

Professor Sudha Seshadri, MD is a behavioral neurologist and the Robert R. Barker Distinguished University Professor at the University of Texas Health Sciences Center, San Antonio. Since December 2017, she has been the Founding Director of the Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases, which was designated as a National Institute on Aging Alzheimer Disease Research Center in 2021. The Institute focuses on comprehensive clinical care, research, and outreach, particularly for underserved Hispanic communities in South Texas. Dr. Seshadri completed her medical education and residency in India, followed by additional training at Boston University and fellowships in Neurobiology of Aging and Neuroepidemiology. Her research targets Alzheimer’s disease and vascular brain injury, supported by over $95 million in NIH funding and 500+ publications. She has lectured extensively, nationally and internationally and leads several national and international consortia. A recognized leader in her field, she has mentored over 45 professionals and aims to develop effective interventions for dementia while empowering future clinicians and scientists.

Jackie Shapiro, MSW | AFTD Ambassador

Jackie Shapiro’s Bio

Jackie first learned about AFTD in October 2020, when her mother was diagnosed with bvFTD and learned that the progranulin (GRN) mutation was the cause, despite there being no family history of dementia. Since then, Jackie has used social media as a platform to educate others about FTD, advocate for caregivers and families, and discuss genetics and genetic testing. She has also become a resource for other "daughters and sons of FTD" to discuss the unique dynamic of being a young adult who has a parent with this disease. She has been featured in a caregiving documentary, interviews, and several podcasts, and works with pharmaceutical companies to educate their staff on FTD and how to work with families dealing with dementia. She is excited to be part of the AFTD community as an Ambassador and hopes to continue to fight FTD until there is a treatment or a cure.

Adam Staffaroni, PhD | UCSF

Dr. Staffaroni's Bio

Dr. Staffaroni is a clinical neuropsychologist and Associate Professor of Neurology at the UCSF Memory and Aging Center. The focus of his research is to improve early detection, prognosis, and monitoring in neurodegenerative diseases, particularly frontotemporal dementia. He coleads the FTD Prevention Initiative's data infrastructure project and has led the harmonization of data across international familial FTD consortia to enable disease progression modeling, endpoint selection, and clinical trial simulations. He has also led several efforts to develop reliable, valid, and scalable remote data collection methods to help surmount barriers to FTLD clinical trials.

Evelyn O. Talbott, Dr. PH, MPH | University Of Pittsburgh

Dr. Talbott's Bio

Dr Talbott is a Professor of Epidemiology at the University Of Pittsburgh, School of Public Health. Her areas of expertise are in cardiovascular and environmental epidemiology and has she has authored 220 peer reviewed articles and book chapters devoted to the subjects. As an environmental epidemiologist with more than 35 years of experience, her work has centered upon both case-control as well as cohort studies involved with chronic and acute health effects of ambient air pollution (PM2.5 and air toxics). She was the director of one of five CDC Academic Centers for Excellence in Environmental Public Health Tracking at the University of Pittsburgh.

For the last 20 years she has been investigating the relationship of environmental and occupational exposures and the risk of neurodegenerative diseases including ALS (Amyotrophic Lateral Sclerosis), and dementia. She is the PI of a retrospective cohort investigation within the Women’s Health Initiative cohort of 161,000 women considering long-term exposure to PM air pollutant constituents and other air toxics and risk of ALS. Her most recent work involves a CDC funded study of the" Characterization of Potential Environmental Risk Factors for ALS” Using the ATSDR ALS Registry Cases and a Control Population. Her most recent publication in the Journal of ALS/FTD reported on an association of Persistent Organic Pesticides including heptachlor, oxychlordane and its associations with ALS in a case control study. She is a fellow of the American Heart Association and the recently was the recipient of the John Snow award in Epidemiology from the American Public Health Association.

Carmela Tartaglia, M.D., FRCPC |

Dr. Tartaglia's Bio

Dr. Carmela Tartaglia, M.D., FRCPC, is a clinician-scientist at the University Health Network and Professor at the University of Toronto. She maintains a cognitive/ behavioral clinic where she sees patients with neurodegenerative diseases with a focus on frontotemporal lobar degeneration. She holds the Marion and Gerald Soloway Chair in Brain Injury and Concussion Research. She uses a multi-modal approach that combines imaging and biofluid biomarkers to bring precision medicine and targeted, early treatments to her patients.

Elena Tsoy, PhD | UCSF

Dr. Tsoy's Bio

Dr. Tsoy is an Assistant Professor of Neurology at the University of California San Francisco Memory and Aging Center and the Global Brain Health Institute. She is a bilingual neuropsychologist with primary interests in early detection and diagnosis of neurodegenerative disease, multicultural neuropsychology, and healthcare disparities in Alzheimer’s disease and related dementias (ADRD). She works on elucidating social and structural factors underlying disparities in dementia diagnosis and care nationally and internationally and on the development and validation of novel cognitive assessment tools for the detection and diagnosis of cognitive disorders in underserved populations. An overarching goal of Dr. Tsoy’s research is to advance dementia prevention and care in diverse populations and lay the foundation for equity-based therapeutic and diagnostic practices which would improve the lives of all older adults.

Chi Udeh-Momoh, PhD | Wake Forest University, School of Medicine

Dr. Udeh-Momoh's Bio

Dr. Chi Udeh-Momoh is a distinguished Translational Neuroscientist specializing in dementia prediction and prevention, with dual academic faculty appointments at Wake Forest University, USA, and Aga Khan University, Kenya. She also holds positions as Senior Lecturer at The Sheffield Institute for Translational Neuroscience, UK, and at Karolinska Institute, Sweden. At Wake Forest, Dr. Udeh- Momoh leads the Udeh-Momoh Lab for Global Brain Health Equity (U-M = BRAIN), where her work focuses on advancing culturally informed and equitable strategies to promote successful brain and cognitive aging. Her research integrates biological, psychosocial, and economic factors to address brain health disparities across diverse populations. As co-Director of the Imarisha Centre for Brain Health and Aging and Head of the Genomics and Biomarker Core at the Brain and Mind Institute in Kenya, Dr. Udeh-Momoh is committed to building capacity for dementia research, education, and clinical care across Africa and the Global South. She collaborates with mental health and neuroscience experts to strengthen regional capacities and train future leaders in brain health research. She is also a Senior Atlantic Fellow for Equity in Brain Health.

In 2018, Dr. Udeh-Momoh initiated the AFRICA-FINGERS program, a multinational initiative spanning 14 African countries, aimed at promoting healthy aging through culturally relevant, sustainable interventions. She co-leads the World-Wide FINGERS Biomarker Consortium as well as the Global CEOi/Davos Alzheimer’s Collaborative, focusing on implementing blood-based biomarkers in clinical practice. Her leadership extends to the Alzheimer’s Association ISTAART Biofluids Biomarker-based PIA, where she founded the Saliva Biomarkers for Dementia Research workgroup.

Dr. Udeh-Momoh has spearheaded multi-national studies funded by prominent organizations such as the Alzheimer's Association, Gates Ventures, UKRI Medical Research Council, and the Wellcome Trust. Her previous work at Imperial College London, collaborating with industry leaders, advanced biomarker research in underserved settings. She currently serves on the NIH-funded National Academies of Sciences, Engineering, and Medicine committee for global dementia research priorities, as well as the WHO Guideline Development Group on dementia risk reduction. With a highly competitive PhD studentship from the University of Bristol’s MRC Centre for Synaptic Plasticity, Dr. Udeh-Momoh’s research leverages a precision health approach, addressing sex, gender, and ethno-racial disparities in dementia risk. Her pioneering work aims to translate neuroscience discoveries into real-world health improvements, positioning her as a leading voice in dementia prevention and equitable brain health.

Marijne Vandebergh, PhD | VIB/University of Antwerp

Dr. Vandebergh's Bio

Marijne Vandebergh graduated with a master’s degree in Biomedical Sciences from the KU Leuven, Belgium, in 2017, after which she pursued a PhD degree at the Laboratory for Neuroimmunology (KU Leuven, Belgium). In her doctoral studies, Marijne investigated the role of the environment and genetics on the susceptibility and clinical heterogeneity of the autoimmune disease multiple sclerosis through genome-wide association studies and Mendelian randomization study designs. Since 2022, Marijne is a postdoctoral researcher at the VIB-UAntwerp Center for Molecular Neurology in the lab of Prof. Rosa Rademakers, focusing on genetic modifiers in frontotemporal lobar degeneration (FTLD).

Christine M. Walsh, PhD | University of California, San Francisco

Dr. Walsh's Bio

Christine M. Walsh, PhD, is an Associate Professor at the University of California, San Francisco. She received her BA degree in physiology from Trinity College Dublin, University of Dublin in Ireland; and received her PhD from the department of Neuroscience at the University of Michigan. In 2011 Dr. Walsh joined the UCSF Memory and Aging Center where she has been studying sleep and rest-activity rhythms in both healthy older adults and in individuals with neurodegenerative diseases, particularly 4R tauopathies.

Marc G. Weisskopf, Ph.D., Sc.D. | Harvard University, T.H. Chan School of Public Health

Dr. Weisskopf's Bio

Marc G. Weisskopf, Ph.D., Sc.D., is the Cecil K. and Philip Drinker Professor of Environmental Epidemiology and Physiology at the Harvard T.H. Chan School of Public Health in the departments of Environmental Health and Epidemiology. He is the Director of the Harvard TH Chan NIEHS Center for Environmental Health, Co-Director of the JPB Environmental Health Fellowship Program at Harvard, and Director of Epidemiological Studies for the Football Players Health Study at Harvard. Dr. Weisskopf received his Ph.D. in Neuroscience from the University of California, San Francisco, and his Sc.D. in Epidemiology from the Harvard T.H. Chan School of Public Health. He spent two years as an Epidemic Intelligence Service Officer with the Centers for Disease Control and Prevention working on environmental health issues in the Wisconsin State Health Department. His neuroscience work focused on molecular and cellular aspects of neural signaling and plasticity. His epidemiological work focuses on the influence of environmental exposures on brain health across the life course, including outcomes such as autism spectrum disorders, amyotrophic lateral sclerosis, cognitive function and dementia, and psychiatric conditions. Dr. Weisskopf also works on epidemiological methods issues to improve causal inference from observational environmental health studies.

Jennifer S. Yokoyama, PhD | University of California, San Francisco

Dr. Yokoyama's Bio

Jennifer Yokoyama is a geneticist and neuroscientist interested in how genomic variation contributes to brain structure and function in aging and neurodegenerative disease in diverse populations. Jennifer conducted her PhD work in behavioral genetics at UCSF and pursued postdoctoral training in neuroimaging prior to starting her own research group at UCSF. Her Neurogenetics in Aging lab conducts clinical research using statistical genetics, computational biology, single-cell methods, and neuroimaging analyses of multi-omics data to study Alzheimer’s disease and frontotemporal dementia in diverse populations. The overarching goals of her research are to identify novel genetic contributions to disease, unravel poorly understood aspects of disease pathobiology, and discover accessible, scalable biomarkers for diagnosis and prognosis of neurodegenerative diseases.

Summit Agenda

January 22, 2025

January 23, 2025

7:15-8:15 AM
Breakfast

8:15-8:30 AM
Opening Remarks

8:30-9:35 AM
Session 1: Introduction: FTD Risk Factor Research
Moderator: Chiadi Onyike, MD, MHS (Johns Hopkins University)

8:30-8:55 AM
State of the Science & Clinical Epidemiology for FTD
James Rowe, MD, PhD (University of Cambridge)
20 min + 5 min Q&A

8:55-9:15 AM
Current Landscape of Risk Factor Research for Neurodegenerative Diseases
Jose Luchsinger, MD, MPH (Columbia University Medical Center)
15 min + 5 min Q&A

9:15-9:35 AM
Panel Discussion

9:35-10:50 AM
Session 2: Risk Factor Research Study Design
Moderator: Chiadi Onyike, MD, MHS (Johns Hopkins University)

9:35-9:50 AM
Epidemiological Methodologies for Neurodegenerative Disease Risk Factor Research
Marc Weisskopf, PhD, ScD (Harvard University)
10 min + 5 min Q&A

9:50-10:05 AM
Clinical Trial Design for Population Interventions
Chi Udeh-Momoh, PhD (Wake Forest University)
10 min + 5 min Q&A

10:05-10:20 AM
Cross-Cultural Assessments in FTD
Sanne Franzen, MSc, PhD (Erasmus Medical Center)
10 min + 5 min Q&A

10:20-10:50 AM
Panel Discussion

10:50-11:05 AM
Coffee Break

11:05 AM-12:50 PM
Session 3: Endogenous Risk: Genetics
Moderator: Manuela Neumann, Prof. Dr. (DZNE)

11:05-11:25 AM
Risk Factor Inheritance Patterns for FTD
Corey McMillan, PhD (University of Pennsylvania)
15 min + 5 min Q&A

11:25-11:45 AM
TMEM106B & Other Potential Modifiers of Penetrance
Marijne Vandebergh, PhD (VIB/University of Antwerp)
15 min + 5 min Q&A

11:45 AM-12:05 PM
Genetic Risk Factors Linked to Neurodevelopmental Changes
Elizabeth Finger, MD (University of Western Ontario)
15 min + 5 min Q&A

12:05 PM-12:25 PM
Variation in Genetic Risk Across Populations
Juliana Acosta-Uribe, MD, PhD (UCSB)
15 min + 5 min Q&A

12:25-12:50 PM
Panel Discussion
Panelist: Session Speakers

12:50-1:50 PM
Lunch

1:50-3:10 PM
Session 4: Endogenous Risk: Beyond Genetics
Moderator: Jennifer Yokoyama, PhD (UCSF)

1:50-2:05 PM
Impact of Biological Sex & Gender on FTD Onset
Kaitlin Casaletto, PhD (UCSF)
10 min + 5 min Q&A

2:05-2:20 PM
Traumatic Brain Injury
Breton Asken, PhD, ATC (University of Florida)
10 min + 5 min Q&A

2:20-2:40 PM
Preexisting Conditions as Risk Factors for Dementia
Sudha Seshadri, MD (University of Texas, San Antonio)
15 min + 5 min Q&A

2:40-3:10 PM
Panel Discussion

3:10-3:25 PM
Coffee Break

3:25-4:40 PM
Session 5: Exogenous & Ethnocultural Factors
Moderator: Carmela Tartaglia, MD (University of Toronto)

3:25-3:40 PM
Environmental Risk Factors for PSP
Speaker: Irene Litvan, MD (UCSD)

3:40-3:55 PM
Environmental Risk Factors for ALS
Evelyn Talbott, DRPH, MPH (University of Pittsburgh)
10 min + 5 min Q&A

3:55-4:10 PM
Sociocultural and Psychological Risk Factors for Dementia: A Global Perspective
Miguel Arce Renteria, PhD (Columbia University)
10 min + 5 min Q&A

4:10-4:40 PM
Panel Discussion

4:40-4:55 PM
Day 1 Closing Remarks & Group Photo

6:00-7:00 PM
Reception

7:00-9:00 PM
Dinner

January 24, 2025

7:30-8:30 AM
Breakfast

8:30-8:40 AM
Day 2 Opening Remarks

8:40-10:10 AM
Session 6: Behavioral Risk Factors
Moderator: Kaitlin Casaletto, PhD (UCSF)

8:40-8:55 AM
Cognitive & Social Engagement
Lauren Massimo, PhD, CRNP (University of Pennsylvania)
10 min + 5 min Q&A

8:55-9:10 AM
Diet & Nutrition
Klodian Dhana, MD, PhD (Rush University)
10 min + 5 min Q&A

9:10-9:25 AM
Physical Activity & Exercise
Ozioma Okonkwo, PhD (University of Wisconsin, Madison)
10 min + 5 min Q&A

9:25-9:40 AM
Sleep as a Risk factor for PSP & Neurodegeneration
Christine Walsh, PhD (UCSF)
10 min + 5 min Q&A

9:40-10:10 AM
Panel Discussion
Panelist: Session Speakers

10:10-10:25 AM
Coffee Break

10:25 AM -12:00 PM
Session 7: Future of FTD Risk Factor Research
Moderator: James Rowe, MD, PhD (University of Cambridge)

10:25-11:25 AM
Lightning Round: Opportunities & Resources to Consider as Part of Risk Factor Research (7 min/speaker)

- Disease Progression Models
  Adam Staffaroni, PhD (UCSF)

- GENFI & Natural History Study
  Arabella Bouzigues, BSc, MSc (University of College London)

- Digital Assessment Tools
  Emily Paolillo, PhD (UCSF)

- FTD Disorders Registry
  Penny Dacks, PhD (AFTD)

- FPI Database Harmonization
  Leah Forsberg, PhD (Mayo Clinic Rochester)

- Claims Databases
  Elena Tsoy, PhD (UCSF)

- Prevent ALS
  Matthew Harms, MD (Columbia University)

11:25 AM-12:00 PM
Panel Discussion

12:00-1:45 PM
Lunch and Panel Discussions

12:15-12:45 PM
Panel: Ethical & Person-Centered Considerations for Reporting Risk Factor Research
Moderator: Penny Dacks, PhD (AFTD)

Discussants:

- Jalayne Arias, JD, MA (Georgia State University)
- Daniel Brickman, PhD (Brickman Biotech Consulting)
- Jacquelyn Shapiro, MSW (AFTD Ambassador)
- Kristin Holloway (AFTD Board)
- James Rowe, MD, PhD (University of Cambridge)

12:45-1:45 PM
Identifying Conclusions that can be Drawn About Risk Factors for FTD
Moderators: Chiadi Onyike, MD, MHS (Johns Hopkins University) & Kaitlin Casaletto, PhD (UCSF)

1:45-2:00 PM
Closing remarks
Moderators: Penny Dacks, PhD (AFTD) & Kristin Holloway (AFTD Board)

2:00 PM
Adjourn

Attendee List

Juliana Acosta-Uribe, MD, PhD
UCSB

Miguel Arce Renteria, PhD
Columbia University Medical Center

Jalayne Arias, JD, MA
Georgia State University

Breton Asken, PhD, ATC
University of Florida

Michael Benatar, MD, PhD
University of Miami

Joan Berlin, BA
Family Advocate

Arabella Bouzigues, BSc, MSc
University College London

Daniel Brickman, PhD
Community Advocate

Kaitlin Casaletto, PhD
UCSF

Rita Choula, MA
AFTD Board

Penny Dacks, PhD
AFTD/FTDDR

Dimitry Davydow, MD, MPH
University of Florida

Klodian Dhana, MD, PhD
Rush University Medical Center

Susan Dickinson, MSGC
AFTD

Shana Dodge, PhD
AFTD

Elizabeth Finger, MD
University of Western Ontario

Leah Forsberg, PhD
Mayo Clinic Rochester

Sanne Franzen, MSc, PhD
Erasmus Medical Center

Samantha Garner
AFTD

Mark Garret, MD
MGH/Harvard University Medical School

Amanda Gleixner, PhD
AFTD

Jill Goldman, MS, MPhil
AFTD Board/Columbia University Medical Center

Charlotte Graafland, MA
Erasmus Medical Center

Bridget Graham
AFTD

Dale Greenberg
ConferenceDirect

Matthew Harms, MD
Columbia University

Alexandra Holloway, PhD
Holloway Family

Kristin Holloway
AFTD Board

Linde Jacobs, BSN
Cure MAPT FTD

Kim Jenny, MS
AFTD

Esther Kane, MSN, RN
AFTD

Kasey Kissick-Duarte, BA
Kissick Family Foundation

Irene Litvan, MD
UCSD

Jose Luchsinger, MD, MPH
Columbia University Medical Center

Lauren Massimo, PhD, CRNP
University of Pennsylvania FTD Center

Corey McMillan, PhD
University of Pennsylvania

Christopher Morrow, MD, MHS
Johns Hopkins University

John Musick, BA
End the Legacy

Manuela Neumann, Prof. Dr.
DZNE

Karen Nuytemans, PhD
University of Miami

Ozioma Okonkwo, PhD
UW Madison

Chiadi Onyike, MD, MHS
Johns Hopkins University

Emily Paolillo, PhD
UCSF, Memory and Aging Center

Girish Patangay, BS
FTDDR

Sylvie Raver, PhD
Milken Institute

James Rowe, MD, PhD
University of Cambridge

Kristin Schneeman, BA
AFTD Board

Sudha Seshadri, MD
UT Health, San Antonio

Jacquelyn Shapiro, MSW
AFTD

Adam Staffaroni, PhD
UCSF

Kate Still, PhD
AFTD

Marg Sutherland, PhD
AFTD Board/Chan Zuckerberg Initiative

Evelyn Talbott, DRPH, MPH
University of Pittsburgh School of Public Health

Carmela Tartaglia, MD
University of Toronto

Kimberly Torres
AFTD Board Chair

Elena Tsoy, PhD
UCSF

Chi Udeh-Momoh, PhD
Wake Forest University, School of Medicine

Marijne Vandebergh, PhD
VIB/University of Antwerp

Christine Walsh, PhD
UCSF

Marc Weisskopf, PhD, ScD
Harvard University, T.H. Chan School of Public Health

Jennifer Yokoyama, PhD
UCSF

The Association for Frontotemporal Degeneration

AFTD’s mission is to improve the quality of life of people affected by FTD and drive research to a cure. We work every day to advance:

Research. We promote and fund research toward diagnosis, treatment and a cure.
Awareness. We stimulate greater public awareness and understanding.
Support. We provide information and support to those directly impacted.
Education. We promote and provide education for healthcare professionals.
Advocacy. We advocate for research and appropriate, affordable services.

AFTD Board of Directors

Kimberly Pang Torres
Chair, Skillman, NJ

Rita Choula, M.A.
Vice Chair, Beltsville, MD

Julie Kelly
Treasurer, Wyndmoor, PA

Gail Anderson
Recording Secretary, Jacksonville Beach, FL

Halima Amjad, MD, PhD
Laurel, MD

Kyle Birmingham, CFA
Media, PA

Helen-Ann Comstock
Perkasie, PA

Jill S. Goldman, MS, MPhil, CGC
Katonah, NY

Kristin Holloway
San Francisco, CA

Shoshana Derrow Krilow, Esq.
Arlington, VA

Jary Larsen, PhD
San Francisco, CA

Joseph Marquez, M.D.
Seattle, WA

Kathy Newhouse Mele
New York, NY

Donald E. Newhouse
Lambertville, NJ

Kristin Schneeman
Westport, CT

Valerie L. Snow, Esq.
Philadelphia, PA

Margaret Sutherland, PhD
Gig Harbor, WA

Abrar Tanveer
Austin, TX

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