A Strong Start to 2026 in the Kabuki Syndrome Community!
This is the January 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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After an exciting end of year and an energizing start to January, we’re feeling inspired by what’s possible and deeply grateful for this engaged community. Below are a few highlights showing how, together, we’re improving the lives of people impacted by Kabuki syndrome.
Wisconsin Students Host Kabuki Syndrome Awareness Night
These incredible teens from Wisconsin are a powerful example of community-led impact. They hosted a Kabuki Syndrome Awareness Night at a high school basketball game, welcoming more than 200 attendees to learn about and support the Kabuki Syndrome Foundation in honor of their friend.
Because of champions like them, momentum toward treatments for Kabuki syndrome continues to grow. Stay tuned for a new opportunity to share your story, activate your own community, and come together for Rare Disease Day on February 28, 2026.
Research Update: Expanding Drug Repurposing Efforts
We are pleased to share an important update on our drug repurposing study with Unravel Biosciences. Building on the initial work investigating Kabuki syndrome type 2 (KDM6A), the Kabuki Syndrome Foundation (KSF) has invested an additional $66,500 to expand the study to include participants with Kabuki syndrome type 1 (KMT2D).
In this study, data from participants will be analyzed through Unravel’s proprietary AI platform to predict compounds from a library of FDA approved drugs as well as nutraceuticals that may help improve the symptoms of Kabuki syndrome.
This drug repurposing approach can be faster and less expensive than developing new drugs from scratch.
We’re so grateful for how quickly our global community stepped up to participate in this research opportunity.
Learn More: Drug Repurposing and Study Participation
Resource For You: Support 365 Days a Year
Life with Kabuki syndrome doesn’t always follow a schedule – and neither does our support.
Whether you’re looking for a publication, helping a newly diagnosed family, or simply unsure where to turn next, our team is here for you. You can reply directly to any KSF email or submit a question or suggestion through our website anytime, because families deserve support whenever they need it.
What’s Coming Next
Here’s what to look forward to next month:
- Our 2025 Impact Report, including total funds raised and the generosity behind our end-of-year matching campaign
- Rare Disease Day – Saturday, February 28, 2026: New tools to help you start your own fundraiser, engage your network, and make a difference for families affected by Kabuki syndrome
We’re off to a strong and uplifting start, built on connection and progress, and hope.
Sign up below or at Kabukicount.com to stay up-to-date on the latest Kabuki syndrome news.