A Mission for the Next Chapter

When a group of frustrated families founded Kabuki Syndrome Foundation, the goal was simple but ambitious: help make treatments for Kabuki syndrome possible. What began as an organization focused on funding research has evolved into the global hub for Kabuki syndrome research, collaboration, and community.

Since 2018, KSF has awarded 28 research grants to 29 investigators in 7 countries and invested more than $2.8 million in treatment research. But research funding is only part of the story.

As our organization has grown, our work has expanded.

Today, KSF brings together a collaborative international network of more than 260 clinicians, researchers, and industry professionals who are working together to accelerate progress. At the same time, KSF has become a trusted resource for individuals and families living with Kabuki syndrome, providing education, resources, and connections that help families navigate the unique challenges of this rare condition while building a community where no one has to face those challenges alone.

We do more than fund research. We help turn scientific discoveries into meaningful clinical impact. We support collaboration, strengthen research infrastructure, connect families with experts, and help prepare the community for the clinical trials and therapies of tomorrow.

As our work has expanded, it became clear that our mission should evolve as well. Today we are proud to announce the adoption of a new mission statement that better reflects who we are today and where we’re headed.

The Kabuki Syndrome Foundation drives research and treatment development, while fostering a global community of families, clinicians, and researchers to improve the lives of people with Kabuki syndrome.

The same determination that inspired a small group of families to fund research when none existed continues to drive us today. The difference is that today we are building something much bigger than any one research project. We’re building hope. 

While there is still much work ahead, we have never been more hopeful about the future. Every collaboration, every discovery, every family, and every supporter brings us one step closer to a world where people with Kabuki syndrome have access to better care, effective treatments, and brighter futures.

This mission captures not only where KSF is today, but where we are determined to go.