KMT2E Foundation O'Donnell-Luria-Rodan Syndrome

09/24/2026

* Please note comments on this post will not be monitored, only emails sent to [email protected]

Do we have any families in the greater-Houston, Texas vicinity that would be interested in hearing a KMT2E presentation by Simons? The KMT2C Foundation is hosting their conference November 19th, and we have the opportunity to do a presentation for the KMT2E community as well. If we have enough interested families / patient advocates, we would make tickets available at a steep discount as only the Simons Searchlight portion of the agenda would speak to KMT2E. Please email [email protected] if you're interested in learning more.

07/10/2026

📣 Simons Searchlight Releases New Quarterly Reports! 📣
📊 Your Simons Searchlight July 2026 quarterly report is here—with updated insights and fresh data on individuals with KMT2E-related syndrome, powered by families like yours.
Check out the valuable information in this report here: https://bit.ly/KMT2EReport
These reports are based on medical history information generously shared by participants and include data in four key areas:
- Age Ranges
- Developmental and Behavioral Conditions
- Neurological Conditions
- Gastrointestinal Conditions
They also feature community participation progress numbers, showing how families are actively moving research forward.
💡 By completing surveys over time, you're helping researchers better understand your condition and how it changes across the lifespan. Together, we’re turning limited knowledge into meaningful discoveries—for your family and others in the future.
Thank you for being part of this important work! 💙
*Not a current Simons Searchlight participant?

Learn how you can contribute to our study and be included in future reports: https://bit.ly/Why_Join_Simons_Searchlight

06/18/2026

Exciting news! The Simons Foundation Autism Research Initiative (SFARI) is funding 17 patient advocacy group (PAG) conferences in 2026 — and we’re proud to see so many of our Simons Searchlight partners included!

These gatherings are vital for bringing together families, researchers, and clinicians to accelerate progress in rare genetic neurodevelopmental conditions. 💡🧬

Learn more and see the full list of funded meetings: https://www.sfari.org/2026/06/15/sfari-to-fund-patient-advocacy-group-conferences-and-travel-awards-for-scientists/

08/10/2025

Our friends at Simons Searchlight have released a new quarterly report featuring updates shared by families like yours! This report highlights how your participation helps researchers better understand long-term developmental patterns using the Vineland Adaptive Behavior Scales – Third Edition (Vineland-3).
Check out the latest report on the Simons Searchlight GENE page below!

Learn more about KMT2E and connect with other Simons Searchlight families with the resources on this page.