Events

The Kabuki Syndrome Foundation’s Annual Research Conference and KSF Webinars are our key community touchpoints and fundraising events. In order to drive research that addresses our community’s greatest needs, we host events that directly speak to those needs and build connections amongst families and researchers.

We bring the latest research to our community and make it accessible to enable participation around the world. 

Watch KSF Events on YouTube

Watch Our Latest Webinar

Updating the prevalence of Kabuki syndrome is key to preparing for successful clinical trials that unlock life-changing treatments. Prevalence can be simply defined as how many people have Kabuki syndrome. The most commonly cited statistic of 1:32,000 is from 1988 – before the genes that cause Kabuki syndrome were discovered! Now is the time to make sure Kabuki syndrome data doesn’t stay in the past.

Dive into the status of Kabuki syndrome prevalence with Dr. Cynthia Willey and the KSF team at our next webinar. We’ll uncover:

  • How 1:32,000 was calculated in 1988
  • Why we need updated data now
  • Who we’re collaborating with to unlock new tools
  • Where Prevalence and Kabuki Count fit into LEAP

 

Watch NowLEAP: The Roadmap to Treatments

Inaugural Fundraising Gala

In a remarkable display of support, the “Quest for a Cure” fundraising gala for Kabuki syndrome raised over $500,000! This inaugural, local event brought together a sold-out crowd of 300 supporters at City Winery in New York City on November 30, 2023. An evening of live entertainment, dinner, silent and live auctions, and a paddle raise proved to be a powerful force in finding treatments for Kabuki syndrome. Thank you to every supporter and the event chairs for making this first event a resounding success! 

Quest for a Cure

LEAP Webinar Series: The Roadmap to Treatments

We’re hosting a series of bite-sized webinars to unveil the projects within LEAP, our bold plan to unlock treatments on an accelerated timeline. 

Each inspiring video of this playlists features experts answering our community’s thoughtful questions live. Dive into LEAP and discover the key role you play as we unlock the brightest futures possible for people affected by Kabuki syndrome. 

Watch Now: The LEAP to Treatments

Highlights from Our 2023 Research Conference

At our latest annual conference, over 400 families, researchers, and clinicians from 38 countries connected and interacted on our virtual platform. This half-day event was filled with pivotal progress updates and energizing calls to action, including: 

Thank you to all our panelists and speakers for sharing your milestones and inspiring us to keep advocating for Kabuki syndrome research!

Watch Now: 2023 Research Conference
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Why is Kabuki Syndrome Treatable?

Thankfully, we know that mutations in two genes can cause the symptoms of Kabuki syndrome. Researchers have shown that symptoms are treatable in mice.

KSF has a plan to drive research to treatments for all people with Kabuki syndrome.