Global Community in Action! The Kabuki Syndrome Collective
This is the September 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.
Kabuki syndrome families, researchers, clinicians, and the KSF team have been taking action in communities and professional networks around the world lately.
Now, we’re getting ready to bring that same energy to Kabuki Syndrome Awareness Day on October 23.
KSF is Growing With Our Community
When a group of determined 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 a global hub for Kabuki syndrome research, treatment development, collaboration, and community.
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.
Kabuki Syndrome Advocates in Action
Over the past month, members of the KSF team and Kabuki syndrome community have been showing up in new spaces and connecting with new audiences!
At the Pan-American Medical Association Conference:
The Melendez family helped bring Kabuki syndrome awareness to a professional medical audience, while Dr. Jacqueline Harris shared information about Kabuki syndrome with physicians and healthcare professionals.
At Global Genes:
Jessica Weatherstone, KSF Associate Director of Research and Community Engagement and Kabuki syndrome parent, represented KSF at the Global Genes Rare Drug Development Symposium in Boston. Jessica shared, “I went in eager to learn and network, and I left with a real sense of hope for the future of rare disease and, more personally, for the possibility that we will find a treatment for my daughter in her lifetime.”
At the University of Maryland:
KSF Volunteer Kristin Anzelc and KSF Advisor Dr. Jacqueline Harris presented “What is Kabuki syndrome?” to medical students, bringing together Kristin’s lived experience as an adult with Kabuki syndrome and Dr. Harris’s expertise as a leading specialist.
And we’ve been hearing an important question from our community:
“How can we raise awareness in more places?”
The answer starts with your connections. You can share KSF resources with your care team, nominate an expert for the KSF Care Network, or donate to help grow our reach!
If you have a connection with a healthcare organization or institution that should know about Kabuki syndrome, we would love an introduction. Contact us any time.
October 23: Take Action for Kabuki Syndrome Awareness Day
Kabuki Syndrome Awareness Day is just one month away!
Looking for something to wear on Awareness Day? Check out the KSF Shop, where part of every purchase funds Kabuki syndrome research and resources.
This year, our research priority for Awareness Day is Kabuki INSIGHTS, KSF’s new global research registry and data hub.
Launching October 1, Kabuki INSIGHTS will begin recruiting participants and collecting health information from people with Kabuki syndrome across the lifespan. The goal is to deepen our understanding of Kabuki syndrome and help support future treatment development.
Learn More About Kabuki INSIGHTS
Global Community Calendar
Stay connected with Kabuki syndrome families and organizations around the world.
Sept. 27
Stichting Kabuki Syndroom Meeting Day – Utrecht, The Netherlands
Oct. 11
The Kabuki Gathering – San Antonio, Texas, USA
Oct. 23
Kabuki Syndrome Awareness Day – Worldwide
Nov. 16
KSF’s Quest for a Cure Gala – New York, New York, USA
Feb.1, 2027
Kabuki Scandinavien Family Program at Agrenska – Gothenburg, Sweden
This October and beyond, let’s keep showing what our community can do when we take action together.
With hope and gratitude,
Team KSF