While dementia affects over 55 million adults worldwide, it is still largely a mystery, with no clear understanding of the underlying causes nor the most effective treatments.
This is even more true of frontotemporal dementia (FTD), a form of the disease that took the life of our founding president, John Kissick.
We are committed to seeking solutions that lead toward greater understanding, diagnosis and treatment for people living with FTD and other neurodegenerative diseases.
Dementia is on the rise yet still widely misunderstood - especially FTD
people live with dementia, a number expected to double by 2050
of FTD cases are likely undiagnosed or misdiagnosed
years on average to get an FTD diagnosis
less NIH funding for FTD research compared with Alzheimer’s disease
Unlike Alzheimer’s disease, FTD affects personality, language, and behavior, and often presents earlier in life, affecting people as young as 30 years old. FTD is often misunderstood and misdiagnosed, leaving families struggling for answers and researchers without the patients needed to advance scientific progress.
As a family with firsthand experience of this destructive disease, we are committed to seeking solutions that lead toward greater understanding, diagnosis and treatment for people living with FTD and other neurodegenerative diseases.
While not in time for John, we are committed to changing the trajectory of dementia for the millions of families affected now and in the years to come.
We are proud to support visionary leaders and organizations who are advancing their fields. Some of our grantees include:
The Association for Frontotemporal Degeneration (AFTD) is the leading organization focused exclusively on the spectrum of FTD disorders.
The 10,000 Brains Project accelerates the use of computational approaches such as AI in the fight against FTD and other neurodegenerative disorders.
Alex Ehrenberg (PhD) is a translational neuroscientist at UCSF’s Memory and Aging Center and the Doudna Lab at UC Berkeley’s Innovative Genomics Institute.
The Genetic Frontotemporal Dementia Initiative (GENFI) is a group of research centres across Europe and Canada with expertise in FTD, coordinated by Professor Jonathan Rohrer at University College London.
Incorporating research and interviews conducted by Jake Broder as a Hellman Visiting Artist at UCSF’s Memory and Aging Center, UnRavelled is a play about love, art, science and who we are on the most profound level.
The Barmada Lab investigates the foundations of RNA and protein homeostasis in neurons, and how disruptions in these processes lead to neurodegenerative conditions such as amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD).
The Kampmann Lab, led by Dr. Martin Kampmann, develops and applies innovative technologies to understand cellular and molecular mechanisms of aging-associated neurodegenerative diseases, and to discover new therapeutic strategies.
The Ling Lab, led by Dr. Jonathan Ling, integrates bioinformatics and genetic engineering to study the underlying mechanisms of neurodegenerative diseases and develop strategies for therapeutic intervention.
The Malpetti Lab, led by Dr. Maura Malpetti, at the University of Cambridge focuses on in vivo biomarkers for inflammation, proteinopathies, and synaptic loss to investigate the pathophysiology of frontotemporal dementia and related disorders.
The Mosalaganti lab combines state-of-the-art cryo-electron microscopy / tomography and correlative approaches with biochemical and cell biology methods to elucidate how lysosomes perform their functions.
Dr. Petrucelli and his research team are leaders in the study of neurodegenerative diseases, focusing on Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), and frontotemporal dementia (FTD).
The Shorter lab, led by Dr. James Shorter at the University of Pennsylvania, explores mechanisms to counter deleterious phase transitions in neurodegenerative disease.
The Ward laboratory at the NIH, led by Dr. Michael E. Ward, investigates how specific mutations and protein misfolding contribute to neuronal dysfunction and degeneration.
The Association for Frontotemporal Degeneration (AFTD) is the leading organization focused exclusively on the spectrum of FTD disorders. Based in King of Prussia, Pennsylvania, AFTD’s staff and Board of Directors work with a national network of volunteers to advance earlier and more accurate diagnosis, accelerate the development of effective therapies, ensure that quality care and support are available to all in need, raise awareness, and advocate on behalf of all who face – or will face – this disease. AFTD works every day to bring forward a world with compassionate care, effective support, and a future free of FTD.
Visit WebsiteThe 10,000 Brains Project accelerates the use of computational approaches such as AI in the fight against FTD and other neurodegenerative disorders. The organization's first major initiative is the creation of a digital brain bank. Neuropathology is considered the gold standard for disease understanding, but most brain tissue is stored away on glass slides. This project will generate ultra-high resolution whole slide images from up to 10,000 patients' brain tissue samples. The dataset will be shared freely with the global research community, where it can be used to supercharge the pursuit of novel biomarkers and more personalized treatments.
VISIT WEBSITEPrincipal investigator: Alexander Ehrenberg, PhD
Alex Ehrenberg (PhD) is a translational neuroscientist at UCSF’s Memory and Aging Center and the Doudna Lab at UC Berkeley’s Innovative Genomics Institute. Neurodegenerative diseases like frontotemporal dementia predictably affect certain brain regions and not others. Dr. Ehrenberg uses tissue collected from patients at autopsy, medical genetics, and laboratory models to understand why neurons are vulnerable or resistant to degeneration. Learning more about mechanisms of selective neuronal vulnerability will help establish new therapeutic targets, especially for patients with inherited disease variants.
Visit WebsiteThe Genetic Frontotemporal Dementia Initiative (GENFI) is a group of research centres across Europe and Canada with expertise in FTD, coordinated by Professor Jonathan Rohrer at University College London. The aim of the study is to understand more about genetic FTD to gain insights into the disease at its earliest stages, as well as markers that allow the progression of the disease to be tracked.
Note: The Kissick Family Foundation's grant to GENFI is administered by its strategic partner, the Milken Institute.
Visit WebsiteIncorporating research and interviews conducted by Jake Broder as a Hellman Visiting Artist at UCSF’s Memory and Aging Center, UnRavelled is a play about love, art, science and who we are on the most profound level. The play explores the fascinating connection between the work of Canadian scientist and painter Dr. Anne Adams (1940–2007) and French composer Maurice Ravel (1875–1937), both of whom had primary progressive aphasia, a form of FTD.
Visit WebsiteThe Barmada Lab investigates the foundations of RNA and protein homeostasis in neurons, and how disruptions in these processes lead to neurodegenerative conditions such as amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). Our studies combine genome engineering, neuroscience, functional genomics, cell biology, automation and advanced microscopy to elucidate pathogenic mechanisms and uncover novel therapeutic strategies operating in ALS, FTD and related disorders. The Kissick Foundation supports new research into the initial stages of ALS and FTD, highlighting unique protein conformations through innovative models that can be used to develop much-needed biomarkers and disease modifiers for use in human clinical trials.
VISIT WEBSITEThe Kampmann Lab, led by Dr. Martin Kampmann, develops and applies innovative technologies to understand cellular and molecular mechanisms of aging-associated neurodegenerative diseases, and to discover new therapeutic strategies. A major focus of our research is Alzheimer's disease and related dementias. We have pioneered a CRISPR-based functional genomics platform in human iPSC-derived neurons and glia, which enables genome-wide modifier screens of disease-relevant cell biology in patient-derived cells. We have also developed cell-type specific CRISPR screening approaches for mouse models of disease. Supported by the Kissick Family Foundation, our current project investigates how genetic risk variants associated with sporadic frontotemporal dementia act in specific cell types, with the ultimate goal to uncover new therapeutic strategies.
VISIT WEBSITEThe Ling Lab, led by Dr. Jonathan Ling, integrates bioinformatics and genetic engineering to study the underlying mechanisms of neurodegenerative diseases and develop strategies for therapeutic intervention. Supported by the Kissick Family Foundation, the Ling lab is focused on understanding forms of frontotemporal dementia (FTD) linked to TDP-43 protein dysfunction. By investigating the types of neurons that are susceptible to developing TDP-43 pathology, their research aims to improve detection methods and enhance biomarkers to advance the diagnosis and treatment of FTD.
VISIT WEBSITEThe Malpetti Lab, led by Dr. Maura Malpetti, at the University of Cambridge focuses on in vivo biomarkers for inflammation, proteinopathies, and synaptic loss to investigate the pathophysiology of frontotemporal dementia and related disorders. To this end, we integrate PET imaging and clinical data with fluid markers and post-mortem pathology to identify and validate early diagnostic and prognostic markers that can inform the design of new disease-modifying treatment strategies. Supported by the Kissick Family Foundation, our Open Network for Frontotemporal dementia Inflammation Research (ON-FIRE) study aims to characterise targetable inflammatory pathways and related blood-based signatures in people with sporadic frontotemporal dementia across diverse communities and >20 research/healthcare centres.
VISIT WEBSITEThe Mosalaganti lab combines state-of-the-art cryo-electron microscopy / tomography and correlative approaches with biochemical and cell biology methods to elucidate how lysosomes perform their functions, specifically characterizing the role of lysosomal membrane proteins in health and disease. With the support of the Kissick Family Foundation, we are investigating mechanisms of how lysosomes contribute to and help clear pathological protein aggregates.
Dr. Petrucelli and his research team are leaders in the study of neurodegenerative diseases, focusing on Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), and frontotemporal dementia (FTD). Their work bridges fundamental research on disease mechanisms with the development of therapeutic targets and biomarkers. The team has made groundbreaking contributions to understanding c9orf72-mediated ALS and FTD, including being among the first to describe RAN translation and antisense pathology in these conditions. They developed the first mouse model to replicate behavioral and neuropathological features of these diseases and characterized key biomarkers, solidifying their leadership in the field.
The lab has also spent over a decade studying TDP-43 and tau-related disorders, with emerging research emphasizing aberrant TDP-43-mediated cryptic splicing in ALS/FTD and its implications for biomarker discovery. Recent investigations have focused on TMEM106b, a lysosomal gene implicated in FTD, exploring its role in disease risk through the accumulation of TMEM106b fibrils. Supported by the Kissick Family Foundation, Dr. Petrucelli and his collaborator, Dr. Michael Ward (NIH), will develop model systems investigating how TMEM106B fibrils form, what their cellular impact is, and what role they play in pathogenesis.
VISIT WEBSITEThe Shorter lab, led by Dr. James Shorter at the University of Pennsylvania, explores mechanisms to counter deleterious phase transitions in neurodegenerative disease. Our multidisciplinary team, including Dr. Christopher Donnelly (University of Pittsburgh) and Dr. Robert Kalb (Northwestern University), is dedicated to uncovering therapeutic modalities to mitigate TDP-43 proteinopathy. Supported by the Kissick Family Foundation, our current project seeks to uncover short RNAs that solubilize the TDP-43 conformers that underpin frontotemporal dementia.
The Ward laboratory at the NIH, led by Dr. Michael E. Ward, investigates how specific mutations and protein misfolding contribute to neuronal dysfunction and degeneration. By studying patient-derived cells and developing advanced cellular models of disease, their team aims to identify critical cellular pathways affected in neurodegenerative disorders and discover new therapeutic strategies. Their research has provided key insights into the role of protein trafficking and RNA-binding proteins in neurodegeneration. Supported by the Kissick Family Foundation, and in collaboration with the Petrucelli lab at Mayo, their current project focuses on how dysfunction of a lysosomal protein, TMEM106B, leads to its aggregation and cellular dysfunction in FTD.
VISIT WEBSITEThe Milken Institute Science Philanthropy Accelerator for Research and Collaboration (SPARC) works to develop, launch, and lead initiatives that propel scientific and medical research. The team published a guide to highlight key barriers and opportunities to finding FTD biomarkers and cures, and now serves as a core strategic partner helping to operate the Kissick Family Foundation’s FTD research grant program. The Milken Institute is a nonprofit, nonpartisan think tank focused on accelerating measurable progress on the path to a meaningful life.
Dr. Li Gan is the Director of the Helen and Robert Appel Alzheimer’s Disease Research Institute at Weill Cornell Medicine and the Burton P. and Judith B. Resnick Distinguished Professor in Neurodegenerative Diseases. She earned her Ph.D. in Cellular and Molecular Physiology from Yale University School of Medicine, followed by postdoctoral training at Harvard Medical School and the Gladstone Institutes at UCSF. Prior to joining Weill Cornell in 2018, Dr. Gan served as a Senior Investigator and Associate Director at the Gladstone Institute of Neurological Disease and as a Professor of Neurology at UCSF.
Dr. Gan’s research advanced our understanding of neuroimmune mechanisms, proteostasis. Her pioneering work on tau acetylation and microglial dysfunction has provided key insights into disease mechanisms, while her development of human iPSC-based platforms and functional genomics approaches has revealed critical disease-modifying pathways. She is actively pursuing strategies to develop therapies that halt or reverse disease progression.
A recipient of the Helis Prize for Parkinson’s Research and the Inge Grundke-Iqbal Award for Alzheimer’s Research, Dr. Gan has authored over 100 publications in leading journals and leads multiple NIH-funded projects. She is a dedicated contributor to the scientific community, serving on editorial boards and grant review panels worldwide. Her commitment to mentorship was recognized with the Jessica M. and Natan Bibliowicz Award for Excellence in Mentoring Women Faculty.
Stephen J. Haggarty, PhD, serves as a faculty member in the Department of Neurology at Harvard Medical School and the Center for Genomic Medicine at Massachusetts General Hospital, where he is the director of the Chemical Neurobiology Laboratory, co-director of the Precision Therapeutics Unit, as well as the scientific director of neurobiology for the Center for the Neuroscience of Psychedelics in the Department of Psychiatry.
Haggarty’s research program operates at the interface of neurology and chemical biology, focusing on the discovery of novel chemical probes to dissect the role of neuroplasticity in health and disease and the use of reprogramming technology to create patient-specific, induced pluripotent stem cells (iPSCs) as ex vivo models of neurogenetic disorders. These interdisciplinary research efforts are guided by knowledge emerging from human genetics regarding the root causes of disease and leverage advances in the field of chemical neuroscience. These endeavors have led to the discovery of novel chemical probes targeting neurotrophic factor signaling, epigenetic regulation of neuronal gene expression, neurogenesis, synaptogenesis, and proteostasis networks, including the first heterobifunctional, small molecules capable of selectively targeting pathological tau for degradation by the proteasome. Collectively, these collaborative efforts seek to address the challenging goal of discovering novel targets and next-generation, disease-modifying therapies using the principles of precision medicine.
Dr. Bruce Miller holds the A.W. and Mary Margaret Clausen Distinguished Professorship in Neurology at the University of California, San Francisco where he directs the Memory and Aging Center, an NIH-sponsored Alzheimer’s Disease Research Center. As a behavioral neurologist whose work emphasizes brain-behavior relationships, he has reported on the emergence of artistic ability, personality, cognition, and emotion with the onset of neurodegenerative disease. Some of these findings have improved diagnostic accuracy, while others are leading to a deeper understanding of brain functional anatomy and disease risk. In 2015, partly in response to research findings showing that 30 to 40% of dementia cases could be eliminated with lifestyle changes, he co-founded the Global Brain Health Institute and the Atlantic Fellows for Equity in Brain Health program. Additionally, he helps lead the Tau Consortium, Bluefield Project to Cure Frontotemporal Dementia, Global Brain Health Institute and the Parkinson’s Spectrum Disorders Center. He has been awarded the Potamkin Award from the American Academy of Neurology, the UCSF Lifetime Achievement in Mentoring, and the AAIC Lifetime Achievement Award from the Alzheimer’s Association. He is a member of the National Academy of Medicine.
Dr. Rademakers received her BSc degree in Biology in 1997 and MSc degree in Biochemistry in 1999 from the University of Antwerp, Belgium. In 2004, she received a PhD degree from the University of Antwerp where she continued her postdoctoral studies before moving to the Mayo Clinic in Jacksonville, Florida in 2005. Since 2007 she was a faculty member at the Neuroscience Department of the Mayo Clinic Jacksonville, Florida, USA, where she became full Professor in 2014. As of 2019, Dr. Rademakers returned to Belgium where she is currently Scientific Director of the VIB-UA Center for Molecular Neurology and full Professor in the Department of Biomedical Sciences at the University of Antwerp.
Her research is focused on the molecular genetics analyses of neurodegenerative diseases, with a special interest in frontotemporal dementia (FTD), amyotrophic lateral sclerosis (ALS) and early-onset Alzheimer’s Disease (AD). Her laboratory has been at the forefront of neurodegenerative disease research since playing a critical role in the discovery of progranulin (GRN) as the first causal gene implicated in FTD. Importantly, in 2011, her laboratory made the discovery that C9ORF72 repeat expansions were the long sought-after cause of ALS and FTD linked to chromosome 9p. Over the last decade her work has expanded into population-based studies to identify FTD genetic risk and modifier factors, including the generation and analyses of whole genome sequences.
Dr. Rademakers has published over 400 peer‐reviewed original articles and reviews. For her work, she has received the Paolo Gontijo Medicine Award and the Sheila Essey Award for ALS Research from the ALS Association in partnership with the American Academy of Neurology. She is also the recipient of the 2016 Potamkin Prize for Research in Pick’s, Alzheimer’s and Related Disorders of the American Academy of Neurology.
Dr. Roberson is a physician-scientist with a focus on age-related neurodegenerative diseases. He earned his A.B. with highest honors from Princeton University, then his M.D. and Ph.D in neuroscience at Baylor College of Medicine where he studied molecular mechanisms of learning and memory. He completed a residency in neurology at the University of California San Francisco, where he also served as Chief Resident in Neurology. After residency, he completed a clinical fellowship in behavioral neurology at UCSF and resumed basic research at the Gladstone Institute of Neurological Disease. He joined the faculty at UAB in 2008.
The Roberson lab studies the neurobiology of Alzheimer’s disease (AD) and frontotemporal dementia (FTD), with a focus on understanding the cellular and molecular mechanisms of these disorders and identifying new therapeutic strategies. Focus areas include tau and its binding partners in neuronal dysfunction in AD, the mechanisms by which genetic risk factors drive AD, and how progranulin deficiency causes FTD.
Dr. Roberson directs the UAB Alzheimer’s Disease Research Center and the Center for Neurodegeneration and Experimental Therapeutics, serves as Vice Chair for Basic and Translational Research in the Department of Neurology, and cares for patients at the UAB Brain Aging and Memory Clinic.
Rita Sattler, PhD, is a professor in the Department of Translational Neuroscience and the David and Weezie Chair of Neurodegeneration Research at the Barrow Neurological Institute (BNI), Phoenix, AZ. Dr. Sattler is the Director of the BNI Education Programs and Co-Director of the Interdisciplinary Graduate Program in Neuroscience at BNI-ASU. Sattler received her master’s and doctoral degrees in neurophysiology from the University of Toronto in Canada. She completed a postdoctoral fellowship in the Department of Neuroscience at Johns Hopkins University School of Medicine in Baltimore, Maryland. She then served as lead scientist for a startup biotech company overseeing assay development and drug screening of lead compounds for Amyotrophic Lateral Sclerosis (ALS). From there, Dr. Sattler joined the Johns Hopkins University Drug Discovery Center strengthening her expertise in preclinical drug development. With this strong translational neuroscience background, Dr. Sattler joined the Department of Neurology as Assistant Professor at JHU, followed by her relocation to the BNI in 2015. Sattler is a member of the American Society for Neuroscience and the American Society for Neurochemistry. She is the recipient of several awards and fellowships, including the Governor’s Gold Medal for the highest academic achievement in graduate studies at the University of Toronto, a Human Frontier Science Program Long-term Fellowship, and a Howard Hughes Postdoctoral Fellowship. She currently serves as grant reviewer for several national and international disease foundations as well as the National Institutes of Health (NIH). Sattler’s research focuses on mechanisms of synaptic dysfunction in dementias, including Frontotemporal dementia (FTD), FTD with motor neuron dysfunction (FTD/ALS), Alzheimer’s disease and Lewy Body dementia using human disease models, including postmortem autopsy tissues, and induced pluripotent stem cells differentiated into neurons and glial cells. Sattler is principal investigator and co-investigator of numerous active grants from the NIH/National Institute of Neurological Disorders and Strokes, the Department of Defense as well as several disease foundations, including the Muscular Dystrophy Association and the Robert Packard Center for ALS Research.
