Back-to-School Resources, New Research Updates, and Family Stories. The Kabuki Syndrome Collective
This is the August 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.
In this month’s newsletter, you can explore resources from our Together for Progress webinar, stories from families who are helping move research forward, tools to support a successful school year, and what’s ahead for Kabuki Syndrome Awareness Day!
Together for Progress, Global Webinar Resources Now Available
In July, families, adults with Kabuki syndrome, clinicians, researchers, and industry partners from 20 countries came together for KSF’s Together for Progress webinar.
The event featured updates on potential treatments, clinical trial education, and new programs designed to advance research and support the global Kabuki syndrome community.
Missed the live event or want to revisit a session? You can now watch the webinar or read the summary at your own pace. You can reply to this email with questions any time.
Progress Powered by People: 2026 Midyear Impact Report
What does research participation look like for a family living with Kabuki syndrome? For 12-year-old Emma, it meant facing her fear of needles so she could join studies that can advance treatment development.
Emma joined our Kabuki Syndrome Outcome Measures and Biomarkers Consortium (KSOC) and, to prepare for her study visits at Seattle Children’s Hospital, took a needle phobia class before completing her blood draw.
“It’s important to do research so people can learn more about Kabuki syndrome.”
Emma’s story is one of the stories featured in KSF’s 2026 Midyear Impact Report: Improving Care Today. Preparing for Tomorrow. Our latest report highlights how families, researchers, donors, and partners are working together to turn progress into meaningful change.
Back-to-School Resources from KSF
A new school year can bring new questions for families navigating Kabuki syndrome. KSF has resources to help families start the year with confidence and make it easier to communicate with teachers and school teams.
✏️ Help your child’s school team get to know them.
Our customizable Canva template gives families a simple way to introduce their student’s strengths, needs, and important information about how Kabuki syndrome may affect learning and everyday experiences at school.
Use our free Canva template
✏️ Consider whether your child has been screened for ADHD.
Research has found that clinically significant attention difficulties are more common in children with Kabuki syndrome than would be expected in the general population. Attention challenges may affect learning, organization, daily tasks, adaptive functioning, and social interactions.
Read or share the research
✏️ Hear from students with Kabuki syndrome.
Six young adults previously shared their experiences with friendships, driving, extracurricular activities, and more during a KSF conference panel. Their stories can offer valuable perspectives as students grow and prepare for the classroom and life beyond school.
Watch the panel on YouTube
Tools like this reflect our broader goals of turning research and community knowledge into practical resources families can use right away.
Get Ready for Kabuki Syndrome Awareness Day: October 23!
Each year, this global day gives our community an opportunity to raise awareness, share information, celebrate the people living with Kabuki syndrome, and help move research forward.
We’re preparing new resources and ways for you to get involved, and you can start now by getting your KSF and Kabuki syndrome swag. Shop our new store, where every purchase also supports research.
You can look forward to a new “rare and…” design every year!
Our research priority for Awareness Day this year will be Kabuki INSIGHTS, KSF’s new global research registry and data hub.
Launching this October, 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 therapeutic development.
Join Kabuki Count and stay tuned for more information about how you can participate.
Global Community Calendar
Stay connected with Kabuki syndrome families and organizations around the world.
Aug. 28-30
Kabukiföreningen Skandinavien Family Day – Växjö, Sweden
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
Every research milestone, family story, and new resource brings us one step closer to a future where people with Kabuki syndrome have better care and access to effective treatments.
Thank you for being part of the global community that makes this progress possible. Together, we’re improving care today and preparing for tomorrow.
If you have any questions, please contact us. We’d love to hear from you.