NR2F1 Foundation Appoints Leora Westbrook as First Executive Director to Lead BBSOAS Research and Advocacy

Leora Westbrook joins the NR2F1 Foundation as its first Executive Director to lead professional growth and accelerate research for the BBSOAS community.

By: AXL Media

Published: Mar 11, 2026, 5:48 AM EDT

Source: The information in this article was sourced from NR2F1 Foundation

A Strategic Pivot Toward Professionalized Nonprofit Leadership

The NR2F1 Foundation has reached a transformative juncture in its organizational history with the appointment of Leora Westbrook as its first Executive Director. Since its inception in 2018, the Foundation has operated as a strictly volunteer-driven entity, fueled by the dedication of families affected by Bosch–Boonstra–Schaaf Optic Atrophy Syndrome (BBSOAS). This transition signals a move toward professionalized leadership and robust infrastructure, intended to stabilize operations as the organization grows in complexity. According to the Foundation, the introduction of a dedicated executive role is a necessary step to manage the expanding needs of a global patient community while maintaining the momentum of its initial grassroots success.

Expanding the Infrastructure for BBSOAS Research

Westbrook’s primary mandate involves strengthening the operational framework required to support advanced clinical research and patient advocacy. By shifting away from a fully volunteer model, the Foundation seeks to broaden its reach within the international medical community and decrease the time required to bring viable BBSOAS treatments to market. As Executive Director, Westbrook is expected to coordinate efforts between the Board of Directors and the Scientific Advisory Board, ensuring that the organization’s research goals are met with the necessary administrative and professional support. This structural shift is designed to transform the Foundation from a support group into a high-functioning research advocacy powerhouse.

Fostering Global Collaboration and Resource Development

A central component of the new executive role is the cultivation of strategic partnerships and the expansion of fundraising initiatives. Westbrook brings a background in healthcare and nonprofit leadership that is intended to improve the Foundation’s long-term sustainability through diversified revenue streams. By increasing awareness of BBSOAS among clinicians and potential donors, the Foundation hopes to foster a more collaborative environment where researchers and families can work in closer proximity. This focus on partnership is intended to ensure that the Foundation remains the central hub for BBSOAS information and development globally.