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Epilepsy Foundation of America
The Epilepsy Foundation of America was founded in 1968 to advance therapies and community support for epilepsy, a neurological disorder affecting roughly...
Epilepsy Foundation of America
The Epilepsy Foundation of America was founded in 1968 to advance therapies and community support for epilepsy, a neurological disorder affecting roughly 1 in 26 Americans. CEO Bernie Savarese, a former executive at the American Heart Association, has led the organization since 2021, steering a portfolio that blends direct patient services with sponsored biomedical research. The foundation deploys capital across several channels: research grants for seizure-detection devices and gene therapies; digital health tools like the Seizure Tracking app; and advocacy funding that influences FDA approval pathways and state-level insurance mandates. Confirmed investments include support for the Epilepsy Surgery Consortium and the Rare Epilepsy Network, a multi-stakeholder data-sharing initiative co-funded with the NIH (per the foundation's annual reports). Geographically, grant funding flows predominantly to US-based academic medical centers and biotech firms, with a smaller international component funding global epilepsy initiatives in low-resource regions. The organization reports annual revenue of approximately $50–60 million (per its Form 990), employs roughly 200 staff, and maintains a network of 47 local affiliates across 33 states. It does not operate a separate investment vehicle beyond its grant-making operations. In 2023, the foundation launched the Epilepsy Foundation Innovation Fund, a $5 million initiative to seed early-stage technologies for seizure detection and sudden death prevention (per the foundation's press release, January 2023). The foundation's structural differentiator is its dual role as both a patient-advocacy organization and a grant-making entity that directly shapes the epilepsy R&D pipeline — a model that lets it leverage patient data collected through its Seizure Tracking app to inform the clinical trials it funds. This patient-centered data feedback loop is uncommon among disease foundations, which typically separate patient support from research prioritization.
General information
Firm type
Nonprofit Health Foundation
Year founded
1968
AUM
Undisclosed
Location
Region
North America
Country
United States
City
Bowie
Corporate office
Bowie, MD, United States
Principals
Bernie Savarese
Chief Executive Officer
Laura Thrall
Chief Development Officer
Dr. Jacqueline French
Chief Medical & Innovation Officer
Sector focus
Frequently asked questions
Who runs investment decisions at the Epilepsy Foundation of America?
CEO Bernie Savarese oversees strategic direction, while Chief Medical & Innovation Officer Dr. Jacqueline French evaluates the scientific merit of grant applications. The board of directors, which includes neurologists and patient advocates, approves major funding commitments.
How does the Epilepsy Foundation source proprietary deal flow?
The foundation sources research proposals through a competitive grant cycle and via its Rare Epilepsy Network, a consortium of academic centers and biotech firms. The Epilepsy Foundation Innovation Fund also accepts unsolicited applications from early-stage startups through its website.
Is the Epilepsy Foundation structured as a grant-making foundation or does it operate more like a venture firm?
It is primarily a grant-making foundation, but the Innovation Fund introduces a venture-like element, providing equity-free seed funding to startups developing seizure-detection and SUDEP (sudden unexpected death in epilepsy) prevention technologies.
Does the Epilepsy Foundation participate in fund commitments or only direct grants?
The foundation exclusively makes direct grants — it does not commit capital to external investment funds. However, it occasionally partners with venture philanthropy groups or corporate foundations on co-funding arrangements.
What investment stages does the Epilepsy Foundation typically target?
The foundation funds preclinical research through the Epilepsy Foundation Innovation Fund (seed stage), as well as clinical trials and health services research via its traditional grants. It does not typically fund later-stage commercialization.
Which sectors does the Epilepsy Foundation explicitly avoid?
The foundation does not fund general medical research outside epilepsy, nor does it invest in pharmaceutical marketing or drug pricing initiatives. It also avoids for-profit entities that do not directly advance epilepsy care.
Where does the underlying wealth come from?
The Epilepsy Foundation is not a wealth-managed entity; its revenue derives from individual donations, corporate partnerships, government grants (including NIH), and event-based fundraising like the National Walk for Epilepsy.
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