Kissick Family Foundation (KFF) Funding Program

Kissick Family Foundation Funding Program

The Kissick Family Foundation has partnered with SPARC since 2022 to analyze and understand the state of the frontotemporal dementia (FTD) research ecosystem and identify where philanthropic investments could be deployed to overcome barriers to scientific progress.

The foundation’s commitment to FTD spans the entire research ecosystem—advancing fundamental understanding of the disease’s pathology, accelerating discoveries of diagnostics and treatments, and raising public awareness. To date, the foundation has invested over $6 million in FTD research alone.

FTD Research & Awareness

SPARC provides strategic guidance and operational support for the Kissick Family Foundation’s FTD research priorities. This includes the FTD Grant Program, collaborations with dementia- and FTD-focused nonprofits, and advisory on additional portfolio grant-making. SPARC also provides strategic insight and subject matter expertise to support their work in raising awareness of dementia and FTD for medical professionals and the general public.

Kissick Family Foundation FTD Grant Program

In addition to the community and research partnerships, the Kissick Family Foundation funds an annual grant program focused on the basic science of sporadic FTD. This distinctive philanthropic initiative supports early-stage or translational research specifically targeting FTD cases without a known genetic link or strong family history.

The program funds projects aimed at uncovering the biological underpinnings of FTD, including its etiology, biomarkers, or treatment targets. To date, 12 research teams have received grants, representing $6 million in new funding for FTD research.

Scientific Priorities in the FTD Grant Program

fundamental science and early-stage translational research in sporadic FTD
rigorous projects that demonstrate courage to approach the field in a new way, with maximum impact
strengthen the research ecosystem around FTD
accelerate progress toward a healthy life for people living with FTD

Funding Details for Awards

Up to five two-year research grants annually
Grants are up to $500,000 in funding over two years, inclusive of indirect costs

Scientific Advisory Board

Li Gan, PhD

Director, Helen and Robert Appel Alzheimer’s Disease Research Institute, Weill Cornell Medical College

Li Gan investigates the molecular mechanisms driving neurodegeneration, including tau pathology and immune responses. Her work aims to understand and target disease pathways relevant to FTD and related disorders.

Stephen J Haggarty, PhD

Director, Chemical Neurobiology Laboratory; Associate Professor, Harvard Medical School; Associate in Neuroscience, Massachusetts General Hospital

Stephen J. Haggarty leads research that combines chemical biology and human genetics to develop precision therapies for neurodegenerative diseases. His team pioneered small-molecule tools to degrade pathological tau and uses patient-derived iPSCs to model neurogenetic disorders like FTD at the cellular level.

William Hu, MD, PhD

Director of Center for Healthy Aging Research and Professor and Chief of Cognitive Neurology, Rutgers University

Rosa Rademakers, PhD

Scientific Director, VIB-UA Center for Molecular Neurology, University of Antwerp

Rosa Rademakers has led pivotal discoveries in the genetics of FTD, including identifying GRN and C9ORF72 as major causal genes. Her research continues to uncover genetic risk and modifier factors in FTD through large-scale genomic studies.

Rita Sattler, MSc, PhD

Professor, Department of Translational Neuroscience, Barrow Neurological Institute

Rita Sattler uses patient-derived iPSCs to explore synaptic dysfunction and neuronal death in FTD and ALS. Her translational research focuses on identifying mechanisms and treatments for neurodegeneration using advanced stem cell models.

Awardees and Projects

Project

Uncovering the TDP-43 Aggregate Proteome and Its Role in FTLD Pathogenesis

Wilfried Rossoll PhD Mayo Clinic Jacksonville, FL, USA

Overview

This research project seeks to determine and compare the molecular composition of diverse TDP-43 aggregates in FTLD-TDP brain tissue by using an innovative microscopy-guided proteomics approach and investigate the contribution of the identified TDP-43-associated proteins to the disease process in advanced tissue culture models of FTLD-TDP.

Project

The Role of ANXA11 in FTLD-TDP

Mercedes Prudencio, PhD Mayo Clinic Jacksonville

Co-Investigator: Yongjie Zhang, PhD, Mayo Clinic Jacksonville

Overview

This research investigates the role of the protein annexin 11 (ANXA11), which appears to clump together with the well-known disease protein TDP-43 in brain cells. The study aims to determine how frequently aberrant ANXA11 occurs in FTD patients and whether it correlates with symptoms, as well as to understand how ANXA11 and TDP-43 work together to damage the brain.

Project

Developing a Misfolded TDP-43 Molecular Degrader

Timothy Miller, MD, PhD Washington University School of Medicine in St. Louis

Co-Investigators: Yuna Ayala, PhD, Saint Louis University School of Medicine; Paul Kotzbauer, MD, PhD, Washington University School of Medicine in St. Louis; Mingzhou Zhou, PhD, Washington University School of Medicine in St. Louis

Overview

This project develops novel therapeutic compounds that specifically target and degrade aggregated TDP-43 protein in frontotemporal dementia. The approach aims to clear toxic TDP-43 aggregates from the cell cytoplasm and restore normal TDP-43 function in the nucleus, potentially providing a targeted treatment for the 50% of FTD cases driven by TDP-43 pathology.

Project

TRIM11 as a Therapeutic Agent for Sporadic FTD

Karen Duff, PhD UK Dementia Research Institute, University College London

Co-Investigator: Ule Jernej, PhD, UK Dementia Research Institute, Kings College London

Overview

This project develops a gene therapy approach to treat frontotemporal dementia (FTD) by using engineered viruses to deliver TRIM11, a protein that can clear toxic tau accumulations from brain cells. The key innovation is creating a system where TRIM11 production activates when toxic tau is present and switches off when the cell returns to normal, potentially making gene therapy safer and more precise for treating neurodegenerative diseases.

Project

Structural Insights into TDP-43 Aggregation and Lysosomal Dysfunction in FTD

Sami Barmada, MD, PhD University of Michigan

Co-Investigator: Shyamal Mosalaganti, PhD, University of Michigan Life Sciences Institute

Overview

This project will provide high-resolution insight into the structures of the irregular proteins (TDP-43) to better understand how these proteins malfunction in the brain to cause FTD. The results of this work could eventually inform imaging studies for detecting TDP-43 protein malformation, for example, to serve as a biomarker for FTD, and the development of therapies that directly act on TDP-43.

Project

Systematic Elucidation of Mechanisms Underlying Genetic Risk for Sporadic FTD

Martin Kampann, PhD University of California

Overview

The project aims to better understand the genetic variants that create risk for the disease, especially those that have not been fully established. This project will examine the genetic pathways in different brain cell types to characterize their relevance to mechanisms of FTD and could uncover new factors associated with sporadic forms of FTD, where a genetic link is unknown.

Project

Cryptic Exon Biomarker Discovery Using Spatial Transcriptomics

Jonathan Ling, PhD Johns Hopkins School of Medicine

Overview

This project aims to better understand certain forms of sporadic FTD, specifically those in which the TDP-43 protein malfunctions. The research seeks to answer questions about where in the brain those malfunctioning proteins are found and in what types of neurons, thus optimizing the detection of TDP-43 and resulting in better biomarkers for the disease.

Project

ON-FIRE: Open Network for Frontotemporal Dementia Inflammation Research

Maura Malpetti, PhD University of Cambridge

Co-Investigators: James Rowe, MD, PhD, University of Cambridge; John O’Brien, MD, DM, University of Cambridge; Alexander Murley, MD, PhD, University of Cambridge

Overview

This grant supports the ON-FIRE: Open Network for Frontotemporal Dementia Inflammation Research consortium led by Malpetti. This consortium consists of a large multi-site (22+ locations) study that will collect data from over 300 patients. This research team seeks to examine biomarkers in the blood to identify inflammation “fingerprints,” linking patterns of neuroinflammation with symptoms and progression in FTD. If successful, the FTD-specific neuroinflammation signatures will create a biomarker for predicting disease progression, designing clinical trials, and identifying targets for new treatments.

Project

Determining the Impact of TMEM106b fibrils on FTLD Pathogenesis

Leonard Petrucelli, MD, PhD University of Michigan

Co-Investigator: Michael Ward, MD, PhD, National Institutes of Health

Overview

This study aims to better understand how certain genetic variants create vulnerabilities for the disease. It will elucidate how a genetic variant (TMEM106b-T185S) and its resulting protein (TMEM106b) confer an increased risk of FTD. The research team seeks to characterize how protein fibrils, formed when proteins misfold and aggregate, affect neurons and contribute to disease.

Project

Defining Oligonucleotide Therapeutics that Reverse TDP-43 Proteinopathy

James Shorter, PhD University of Pennsylvania Perelman School of Medicine

Co-Investigator: Robert Kalb, MD, Northwestern University Feinberg School of Medicine

Overview

This project looks to optimize a potential therapy—short RNAs—that could reverse malfunctioning in some proteins (TDP-43) implicated in FTD. The team will test the therapy in three models—at the protein level, in human neurons, and in mice—and determine its potential as a therapeutic candidate. These short RNAs could provide an alternative treatment option that addresses malfunctioning TDP-43 without damaging its essential function, thus overcoming limitations of currently FDA-approved therapeutics.

Program FAQs

I am a researcher looking for funding for my FTD-related work.

Funding applications for the Kissick Family Foundation Grant Program are open in annual cycles as described in the requests for proposals (RFPs). Please check our Open RFPs page to find out whether an RFP for this program is currently open, whether you’re eligible, or how to apply.

My relative lives with FTD, and they would like to join a clinical trial. Can I sign them up for a clinical trial here?

This funding program is not related to clinical trial recruitment. Please visit Beyond Memory to learn more about resources for FTD patients and their families.

How can I learn more about FTD?

Please visit our FTD page.