Consortium Milestones, Events, and More – The Kabuki Syndrome Collective
This is the March edition of The Kabuki Syndrome Collective, the Kabuki Syndrome Foundation’s newsletter for our global community. Sign up below to receive future editions in your inbox.
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March has been an exciting month with meaningful research progress, new resources, and event announcements! Here are the highlights:
KSF Team Connects with 500+ Genetics Professionals
Last week, the Kabuki Syndrome Foundation (KSF) attended the American College of Medical Genetics and Genomics Annual Clinical Genetics Meeting in Baltimore, where our team connected with more than 500 clinicians and researchers. These conversations are already leading to new collaborations, renewed partnerships, and expanded opportunities to advance Kabuki syndrome research.
Pictured from left to right: Clara Tang, PhD, Chief Scientific Officer; Jessica Weatherstone, PhD, Associate Director of Research and Community Engagement; Patrick Dunbar Executive Director and Co-Founder.
Kabuki Syndrome Consortium Reaches New Milestones
Also in Baltimore this month, researchers and advisors from the KSF-funded and led Kabuki Syndrome Consortium (KSOC) came together to review progress and plan the next steps in advancing Kabuki syndrome research.
Thanks to the participation of more than 150 individuals with Kabuki syndrome and their families, KSOC investigators shared encouraging early results, including data on potential biomarkers and improved tools to measure cognitive and behavioral outcomes in future clinical trials.
We are deeply grateful to the participants, funders, and partners who have made this work possible!
Read More: KSOC Progress Update
Share Your Photos to Raise Awareness
Will you share a recent snapshot or school photo with us? Your photos help us tell meaningful, authentic stories about our community and bring KSF’s mission to life, online and at events like those shared above.
We feature real photos of people with Kabuki syndrome and their families, not AI-created images. By sharing photos, you raise awareness and create connections with supporters around the world.
If you’re willing to participate, please complete our online consent form and reply to this email with your photos.
Fuel the Future of Kabuki Syndrome with Your Community
Leading up to Rare Disease Day on February 28, we launched Fuel the Future! This new, online platform makes it easy to create a virtual fundraiser. Want to ask for donations on your birthday? Having a Memorial Day BBQ? Or have your family and friends been looking for ways to support you? This new platform allows you to do all this and more! And all of your fundraising supports Kabuki syndrome research, resources, and community programs.
To help you start fundraising, we provide image and storytelling templates you can customize to your story, plus an informative video to share. There’s no need to host an event. Just create your virtual fundraiser in minutes and share it via social media, text, or email. Our team is available for one-on-one support anytime.
More than 20 participants are fundraising now! Explore the leaderboard and get tips below:
KSF’s Annual Gala – November 16, 2026
Now entering its fourth year, our Quest for a Cure fundraising gala returns to New York City on Monday, November 16. Stay tuned for more details.
Last year, this event raised more than $620,000 for research in one night!
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Thank you for being part of our community.
If you have a photo to share or any questions, please contact us anytime. We’d love to hear from you.