2025 Annual Report: $1.6M Raised for Kabuki Syndrome
The Kabuki Syndrome Foundation is proud to share our 2025 Annual Report, highlighting a year of meaningful progress for the Kabuki syndrome community.
Below, our Executive Director shares a letter reflecting on the year’s milestones and the momentum that continues to drive our mission forward.
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A Letter from Patrick Dunbar, KSF Co-Founder and Executive Director
Dear KSF Community,
As we reflect on 2025, one word rises to the top: momentum.
Because of you, this past year has been one of measurable progress and powerful milestones for the Kabuki Syndrome Foundation.
Together, we raised more than $1.6 million, surpassing our fundraising goal for the year. That achievement is more than a number. It represents research advanced, families supported, awareness expanded, and a community united around a shared purpose: accelerating progress for individuals living with Kabuki syndrome.
We also experienced an important leadership transition this year. After five years of dedicated and visionary leadership, Janet Lee stepped down as Executive Director. Janet guided KSF through a period of remarkable growth and impact. We are deeply indebted to Janet for everything she has built and the strong foundation she leaves behind. And we are thrilled that she will continue her work with KSF as a board member.
It’s an incredible honor to step into the role of Executive Director. As a founding member of KSF, a longtime Board member, and the uncle of a young adult with Kabuki syndrome, this mission is deeply personal to me. I look forward to connecting with more of our community in the coming months.
This past year marked several landmark achievements as we:
- Recruited 150 families in the first phase of KSOC, our Biomarker and Outcome Measure Consortium, where they saw an expert and were reimbursed for travel costs
- Hosted the global clinical management guidelines consensus meeting, bringing together experts to strengthen standards of clinical care and improve outcomes for individuals with Kabuki syndrome
- Secured approval of an official ICD-10-CM code for Kabuki syndrome in U.S. medical records — a critical step forward for data tracking, care coordination, insurance coverage, and long-term research
- Expanded community-driven fundraising efforts, empowering families and supporters and directly enabling $560,000 in awarded research grants in 2025
These milestones represent progress that many in our community have worked toward for years. They are proof that when our community comes together we are powerful.
And yet, our work is not finished. Families still face daily challenges and urgent needs. The progress we made in 2025 energizes us for what lies ahead in 2026 and beyond.
We are grateful for the trust you place in us. And we are motivated – more than ever – to continue accelerating research, expanding support, and driving towards treatments and brighter futures.
Thank you for believing in what’s possible.
With momentum,
Patrick Dunbar
Executive Director
Kabuki Syndrome Foundation
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