October 1, 2025 — TheKabuki Syndrome Foundation (KSF)announced the appointment of Patrick Dunbar as Executive Director, effective September 30, 2025. Dunbar is one of the Foundation’s original founders and his appointment reflects the continued growth of the organization as it advances research and works to improve the quality of life for individuals with Kabuki syndrome and their families.

Dunbar brings to the role a background in commercial and investment banking, management strategy consulting, and nonprofit leadership. Aco-founder of KSF,he has remained closely involved as a board member with the organization since its inception in 2019. He succeeds in leading the Foundation at a pivotal stage in its evolution, with responsibility for expanding its capacity to invest in research and bring the first therapeutic treatment for Kabuki syndrome into clinical trials.

Since its establishment in 2018, the Kabuki Syndrome Foundation has grown from a small, parent-led nonprofit to a research-driven organization with a Chief Scientific Officer, Director of Research, and three staff members, while retaining a parent-led Board of Directors. To date, KSF hascontributed more than $2.8 million to researchand developed atherapeutic pipelinethat includes nine potential treatments. The Foundation has also convened international experts to produce updated Clinical Management Guidelines, funded collaborative research projects across multiple institutions, and successfully secured a unique ICD-10-CM code for Kabuki syndrome, which takes effect on October 1, 2025.

“KSF is at an inflection point,” said Dunbar. “My focus is to build organizational capacity: to grow sustainable funding, strengthen partnerships with researchers, clinicians, and industry, and apply disciplined portfolio management so the most promising programs advance to clinical trials,” said Dunbar. “Our next challenge is to grow the organization so that we can increase our investment in research and ensure we are ready to support future clinical trials. I am honored to fulfill this role and continue building on the strong foundation that has been set.”

Dunbar’s appointment follows the recent hiring ofMackay Gunn as the Foundation’s first Director of Development.Gunn, an experienced nonprofit strategist and parent of a child with Kabuki syndrome, will lead fundraising and donor engagement strategies to expand the organization’s research capacity.

Janet Lee, who previously served as Executive Director for the last 5 years, will continue to support KSF as a member of the Board of Directors and as a strategic advisor, ensuring continuity and providing insight during this next phase of growth.

Together, these appointments reflect the Foundation’s commitment to strengthening its infrastructure at a time of growing momentum. With a clear research roadmap, millions of dollars already invested, and strong community engagement, KSF is positioned to accelerate progress toward treatments while continuing to provide resources and advocacy for families worldwide.

About the Kabuki Syndrome Foundation
The Kabuki Syndrome Foundation is a nonprofit organization dedicated to advocating for individuals with Kabuki syndrome by advancing research, improving care, and supporting families worldwide. Through global collaboration with clinicians, scientists, and patient advocates, KSF works to accelerate the path to effective treatments and informed clinical management.

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