Supercharge the Search for Cures: Medical Philanthropists Reinvent Giving to Get Results

Context and Motivation

• Federal funding for science and medical research remains stagnant, resulting in slow project progress and the attrition of PhD and master-level scientists from the sector.
• Philanthropy currently represents less than 5% of total medical research funding but is positioned to have an outsized impact due to its ability to act nimbly and assume risks that traditional funders avoid.
• The panel identifies a strategic shift in the sector moving from "passive" or "thankful" philanthropy (reactive check-writing) toward "strategic" or "venture" philanthropy (active problem-solving with defined ROI).

Panelist Profiles and Institutional Capabilities

• Deborah Black (Melanoma Research Alliance - MRA): Co-founded MRA in 2007 after a Stage 2 melanoma diagnosis; the foundation has funded $88 million directly and leveraged over $150 million total in melanoma research.
• MRA Impact Metrics: MRA funded all 11 FDA-approved melanoma therapies, which are now utilized for breast, colon, prostate, and bladder cancers.
• MRA Strategic Model: Enforces a "call to action" requiring funded scientists to attend annual retreats to share failures and successes, preventing siloed research and redundant efforts.
• Cindy Citrone (33 Foundation): Founder/CEO of the 33 Foundation, utilizing a design-thinking and user-centric approach to community investment; currently serves on the board of the Breast Cancer Research Foundation (BCRF).
• Breast Cancer Research Foundation (BCRF) Structure: BCRF operates with no endowment, spending 100% of annual revenue on grants; it has funded 250 institutions and supported every major breast cancer breakthrough in the past 25 years.
• Joyce Keller (Gilbert Family Foundation): Philanthropic Director for Dan and Jennifer Gilbert; the foundation has shifted from broad funding to a "deeper rather than broader" strategy focused on Neurofibromatosis (NF).
• Gilbert NF Strategy: Focuses on two specific areas: vision restoration (downstream impact) and gene therapy (upstream, addressing the mutated gene in every cell).
• Gilbert Vision Initiative: Launched a consortium of vision researchers (previously working on glaucoma and retinitis pigmentosa) to bridge gaps in NF-related blindness research.
• Sergey Brin/Sergey Brin Family Foundation: Currently pivoting from translational research to include basic science to address root causes of Parkinson's disease, aiming to create a unified research roadmap with community buy-in.
• Center for Strategic Philanthropy (CSP): Led by Melissa Stevens, this center helps foundations maximize returns by translating best practices across disease states and guiding strategic pivots.

Strategic Shifts and Venture Philanthropy Models

• BCRF Venture Fund: BCRF is developing a non-profit standard venture fund to select the top 10–12 most promising projects, aiming to move research from laboratory to bedside more efficiently than traditional grant models allow.
• Funding Mechanics: BCRF's board is currently in the development phase of a pilot venture fund, navigating the challenge of balancing new risk-taking with existing successful fundraising streams.
• Translational Gap: The panel notes a "dearth of capital" in translational research (between basic science and clinical trials), creating an opportunity for philanthropy to de-risk this stage where government and industry often step back.
• Philanthropic Capital Attributes: Unlike government or venture capital, philanthropy is not beholden to election cycles or earning cycles, allowing for patient capital that can tackle high-risk, early-stage scientific unknowns.
• Systemic Building Blocks: Effective philanthropy now requires investment in infrastructure beyond science, specifically patient registries, care center networks, and therapeutics networks to facilitate clinical trials.

Convening and Leveraging Non-Cash Assets (The "4 Ts")

• Citrine Organ Donation Campaign: The 33 Foundation pivoted from writing a check to launching a multi-channel campaign after convening 40+ experts who identified low organ donor registration (40–50%) as the primary bottleneck, not a lack of medical technology.
• Asset Utilization: The campaign leveraged the "4 Ts" (Treasure, Talent, Time, Ties), utilizing the 33 Foundation's ties as minority owners of the Pittsburgh Steelers to coordinate a city-wide organ donation push.
• Collaborative Campaign: The initiative expanded to include the Pittsburgh Penguins and Pittsburgh Post-Gazette, aiming to transform Pittsburgh into a "City of Organ Donor Champions" through year-round media and sports integration.
• Public Policy Leverage: The campaign successfully targeted a specific White House deadline (December 15) to push for a social agenda item regarding organ donation.
• Social Media Strategy: The campaign highlights the gap between signed organ donor cards and family consent, using social media to create a permanent digital record of donor intent to bypass family objections.

Industry Challenges and Future Directions

• Nonprofit Consolidation: The sector contains approximately 1.5 million nonprofits, 600,000 of which generate under $1 million in revenue; there is a growing consensus on the need for mergers, acquisitions, or coordinated efficiency to eliminate redundancy.
• Honoring Small Foundations: MRA addresses the issue of small, hyper-specific disease foundations by funding their vetted proposals (covering their administrative costs) while allowing them to retain their names to honor loved ones.
• Medical Device "Valley of Death": Large device manufacturers focus on acquisitions, making it difficult for novel devices to reach commercialization; the panel suggests nonprofit-Pharma partnerships and accelerators to de-risk these assets.
• Millennial Philanthropy: Younger donors increasingly demand hands-on engagement and measurable impact, driving a trend toward more strategic, data-driven, and collaborative giving models.
• Organ Donation Barriers: The panel identified that potential living donors are often deterred by a lack of compensation for lost work time, a structural barrier distinct from the ethical debates surrounding organ sales.
• Data and Statistics: The BCRF is investing in biostatistics expertise, recognizing that data analysis and processing are critical components of curing cancer, not just clinical trials.