Webinar, Panel
Venture Philanthropy in Action: A Case Study of EB Research Partnership and ProQR
Milken InstituteKristin Schneeman, Michael Hund, Alex Silver, Daniel de Boer, Mark de Souza, Esther Krofa
- Session recordings and Q&A functionality are expected to be available for review and participation within a few days of the webinar.
- The first approved treatment for epidermolysis bullosa is anticipated soon, driven by a dedicated organizational commitment to curing the disease.
- Disrupting the status quo in venture philanthropy is expected to generate resistance from traditional sectors, universities, and tech transfer offices accustomed to established methods.
- Non-profits face risks of being viewed as unsophisticated by for-profit actors and may encounter frequent criticism that venture philanthropy falls outside their traditional scope.
- The venture philanthropy model prioritizes recovering time for patients over financial returns, acknowledging that many early-stage projects may not be financially viable.
- Program transitions can occur rapidly, with processes such as lifting a program out of ProQR requiring action within a two to three-week window.
- Establishing a dedicated company focused exclusively on developing medicines is identified as a strategy to drive maximum energy toward objectives.
- The commercialization phase for specific EB mutations is predicted to present greater challenges than the clinical phase, necessitating careful assessment of success probabilities.
- Successful transactions, such as the Wings Therapeutics spin-out, rely on professional conduct and established trust between parties.
- Organizational boards are advised to include diverse leadership with scientific and commercial expertise rather than relying solely on parents.
- Building relationships is viewed as a replicable basis for transactions, with early establishment of scientific and drug development expertise being critical.
- Forming a new company is considered the path with the greatest value potential, potentially resulting in the non-profit becoming an equity holder.
- EBRP intends to avoid taking board seats due to limited expertise and capacity, as well as to prevent financial reporting noise for donors.
- University collaborations generally follow a formula involving a royalty sliding scale based on the percentage of funds provided.
- Investment structures for amounts up to 15 to 20 million dollars commonly include a guaranteed return on investment tied to the specific program.
- Social mandates must never be governed by return mandates in this model, aiming to provide deals that are fair or superior to traditional venture firm terms.
- Venture philanthropy is characterized as predictable only in terms of the ability to plan for it, rather than as a stable traditional revenue line.
- The strategy of generating multiples off original donations is expected to resonate with donors and supporters in the philanthropic community.
- Progress is encouraged through decisive action without seeking prior permission, even after thorough preparation.
- EBRP intends to publish a longer analysis regarding this specific operational model and the broader issues it raises.