Advancing Medical SolutionsFrontotemporal Dementia
RFPKissick Family Foundation Frontotemporal Dementia Grant Program
ReportFrontotemporal Dementia: A Giving Smarter Guide
Frontotemporal dementia (FTD) describes brain conditions characterized by progressive degeneration of the brain’s frontal and temporal lobes. Worldwide, an estimated 1.5 million people are thought to be living with FTD. However, the disease is widely believed to be underdiagnosed and undercounted, and little is known about FTD diagnosis rates across distinct racial and ethnic groups.
Diagnosing FTD is challenging and requires a combination of methods, including physical examination, behavioral assessments, brain imaging, genetic testing, and family medical history. Like most other neurodegenerative diseases, a definitive diagnosis of FTD can only be made upon death after autopsy.
FTD tends to affect people earlier in life than other forms of dementia, which can lead to misdiagnosed psychiatric conditions and inadequate treatments. FTD is thought to be the most common form of dementia in people under the age of 60, with the average age of onset between ages 45 and 65. Although not fatal, FTD symptoms progress to the point where patients need full-time care. The average life expectancy is about 7.5 years after symptom onset.
About the Kissick Family Foundation FTD Grant Program
The Kissick Family Foundation partnered with MI Philanthropy’s Science and Health team in 2022 to analyze and understand the state of the FTD research ecosystem and identify where philanthropic investments could be deployed to overcome barriers to scientific progress.
Using the data and insights from this analysis, which are published in Frontotemporal Dementia, a Giving Smarter Guide, the Kissick Family Foundation aims to make investments in research that accelerate basic discoveries, expedite novel treatment options, and improve patient outcomes for people living with FTD.
The first-ever request for funding proposals of the grant program, announced in November 2023, will make up to $2.5 million in total funding and be made available to researchers from around the world whose work aims to increase scientific understanding of FTD.
The Science Advisory Board
Li Gan, PhD
Director, Helen and Robert Appel Alzheimer’s Disease Research Institute, Weill Cornell Medical College
Stephen J. Haggarty, PhD
Associate Professor, Harvard Medical School; Associate in Neuroscience, Massachusetts General Hospital
Bruce Miller, MD
A.W. and Mary Margaret Clausen Distinguished Professor in Neurology; Director, Memory and Aging Center; Founding Director, Global Brain Health Institute, UCSF
Rosa Rademakers, PhD
Scientific Director, VIB-UA Center for Molecular Neurology; Professor, Department of Biomedical Sciences, University of Antwerp
Erik Roberson, MD, PhD
Professor, University of Alabama at Birmingham
Rita Sattler, PhD
Professor, Department of Translational Neuroscience, Barrow Neurological Institute
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Secure your front-row seat to the 2023 Milken Institute Future of Health Summit right here on our website. Immerse yourself in the world of healthcare innovation and solutions, while you witness renowned medical experts, visionary scientists, and influential political leaders, including Angela Williams, President and CEO, United Way Worldwide; Xavier Becerra, Secretary, US Department of Health and Human Services; Chiquita Brooks-LaSure, Administrator, Centers for Medicare and Medicaid Services; Judy Faulkner, CEO and Founder, Epic Systems; Robert Califf, Commissioner, US Food and Drug Administration; Atul Gawande, Assistant Administrator for Global Health, United States Agency for International Development; Vin Gupta, Chief Medical Officer, Amazon Pharmacy; and more tackle the most critical issues affecting medical research, preventive care, and public health today.
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Advancing Medical SolutionsAmyotrophic Lateral Sclerosis (ALS)
RFPALS Breakthrough Research Fund: Request for Proposals
ReportAmyotrophic Lateral Sclerosis (ALS) A Giving Smarter Guide
OpinionAnd Then There Were Three: Philanthropy’s Role in ALS Drug Development
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal, neurodegenerative disease that affects an estimated 350,000 individuals around the world at any given time. Despite common patterns of symptoms, ALS manifests differently from individual to individual. The mechanisms that govern ALS onset and progression in most people are either unknown or poorly understood.
ALS doesn’t have a cure yet, but increased attention and investment from public and private funders over the last two decades have generated critical progress and momentum. In 2021, Tambourine partnered with the Milken Institute Center for Strategic Philanthropy to review the ALS scientific and funding landscapes and identify opportunities for strategic philanthropic investments. This analysis revealed that an incomplete understanding of the disease’s fundamental biology and mechanisms remains a central, underfunded scientific barrier.
ALS Breakthrough Research Fund
The ALS Breakthrough Research Fund builds on the findings of the Giving Smarter Guide by funding high-risk, high-reward, and innovative discovery-driven research proposals. This program is supported by Tambourine, the philanthropic initiative of Ben and Divya Silbermann. Drawing inspiration and drive from their family experience with ALS, their work includes funding research to enable breakthrough scientific discoveries.
This initiative seeks to change scientific understanding and improve the treatment of ALS by supporting innovative basic and discovery-focused research around the world. It particularly focuses on soliciting and funding creative, high-risk, high-reward ideas that might not otherwise fit existing grant programs but hold the potential to generate breakthrough insights.
RFP Focus: The ALS Breakthrough Research Fund’s 2023 RFP received proposals that reflect exciting, foundational scientific directions that can shed light on ALS mechanisms, sporadic ALS, and non-inherited contributions to disease. The application window for the 2023 RFP is now closed.
Review Process: All submitted proposals will undergo rigorous scientific peer review by an external panel of ALS and related experts. Proposals will be assessed across a number of criteria specified in the RFP. The ALS Breakthrough Research Fund’s scientific leadership – including the Scientific Advisory Board - will utilize scientific review feedback in tandem with the Fund’s strategic direction in making funding recommendations to Tambourine.
Funding Timeline: Scientific Proposals will be evaluated in the Fall of 2023, and selected awardees will be notified as early as December 2023.
Learn more about the 2023 RFP
ALS Breakthrough Research Fund Webinar
On June 8, 2023, the Milken Institute hosted an informational session ahead of the program’s Letter of Intent deadline.
Scientific Advisory Board
Lucie Bruijn, PhD
Therapeutic Area Biomarker Lead, ALS at Novartis UK
Steve Finkbeiner, MD, PhD
Director, Center for Systems and Therapeutics and the Taube/Koret Center for Neurodegenerative Disease Research at Gladstone Institutes
Clotilde Lagier-Tourenne, MD, PhD
Associate Professor of Neurology, Massachusetts General Institute for Neurodegeneration
Shane Liddelow, PhD
Assistant Professor, Department of Neuroscience and Physiology at the NYU Grossman School of Medicine
Diane Re, PhD
Assistant Professor, Environmental Health Sciences at the Columbia University School of Public Health