Emily Kramer Golinkoff | LeadersLink

Organization Profile and Mission

• Emily Kramer-Golinkoff co-founded Emily's Entourage in 2011, a 501(c)(3) dedicated to accelerating drug development for the 10% of Cystic Fibrosis (CF) patients with nonsense mutations who do not benefit from standard therapies.
• The organization was founded out of necessity after Kramer-Golinkoff, a patient with advanced lung disease (30% lung function), identified a lack of coordinated leadership for the "final 10%" despite game-changing breakthroughs available to the other 90%.

Operational Achievements and Financials

• Emily's Entourage has raised over $10 million in direct funding and secured $37.6 million in follow-on funding.
• The organization has awarded 25 research grants to top academic institutions globally.
• A venture philanthropy model was deployed to spin out a CF gene therapy company currently submitting a New Drug Application (NDA) to the FDA.
• A patient registry and clinical trial matchmaking program were launched to expedite recruitment for eligible patients.

LeadersLink Initiative: Goals and Progress

• Kramer-Golinkoff joined the inaugural LeadersLink class with two primary objectives: establishing an IP, monetization, and returns policy for academic grants, and creating an internal vetting process for investment opportunities.
• Grant Policy Implementation:
  • Conducted an environmental analysis to determine best practices, resulting in the adoption of a revenue-sharing model for academic grants.
  • Revised all grant contracts to include the new policy and successfully executed the first round of awards under this framework in January and February.
• Investment Vetting and Leadership:
  • Developed initial criteria for vetting anti-infective opportunities, designed to be applicable to other therapeutic areas.
  • Identified a critical gap in internal leadership, necessitating the creation of a dedicated role to oversee research and strategic investments.

Strategic Hiring and Roadmap

• The organization hired Dr. Chandra Gose as Chief Scientific Officer in January following a search lasting over one year to find a candidate with combined business and deep scientific expertise.
• Dr. Gose is currently finalizing a scientific roadmap that outlines priority therapeutic areas and recommendations for financing allocations between grants and strategic investments.

Challenges Encountered

• Contract Negotiations: The inclusion of the revenue-sharing policy significantly extended the duration of grant contract negotiations, creating a need for additional legal resources to maintain momentum.
• Talent Acquisition: The requirement for a "unicorn" candidate possessing both entrepreneurial and deep scientific backgrounds resulted in a recruitment timeline exceeding 12 months.

Program Outcomes and Strategic Rationale

• Kramer-Golinkoff entered the program lacking traditional professional development in science and fundraising, citing the need for mentorship, management skill acquisition, and community support.
• Access to Faster Cares' network and peer community provided actionable insights that directly increased the organization's impact.
• The participant expressed specific gratitude to the staff, peers, and mentor David Panzerier for facilitating these professional growth opportunities.