In 2015, two parents received the KBG syndrome diagnosis for their son on June 19, and within days they had established the KBG Foundation. A year later, June 21 was celebrated as the first ever KBG syndrome awareness day by the 71 families known to have been diagnosed at that time.
In 2017, the KBG Foundation Board of Directors voted to recognize awareness day annually on June 19, the date the founders' son was diagnosed.
On KBG Day 2020, several families reached out to the Foundation to ask if awareness day could be moved so it would not conflict with Juneteenth, which at the time had not been designated an official holiday, and was not widely celebrated in some of the states where board members lived.
The Foundation Board voted to change the date to June 11: a hat tip to the ANKRD11 gene.
Looking for a cool KBG syndrome shirt? Maybe you'd enjoy a nice pillow or hat? We've got that! Visit the KBG syndrome Merchandise store!
Use these tools to help you raise awareness about KBG syndrome and the KBG Foundation year-round. You’ll find social media frames, downloadable activity pages, a guide to request a KBG Syndrome Awareness Day state proclamation and more.
This year-round, international activity is a creative way to showcase your support for KBG syndrome awareness and provide a shareable smile while doing it! We invite you to join the FB KBG Rocks! Group and get painting!
Get this fun and educational 21 page Activity Book and learn more about KBG syndrome in a fun, colorful way!
Each city, state, town and province has a way to proclaim a specific date to be of special significance. Learn how to get a proclamation in your state!
The KBG Foundation is an all-volunteer 501(c)3 organization that relies on individual and corporate contributions to run our programs. Want to hold a fundraising event in your community? Check out our guide to help you get started.
The Midwest Family Region Awareness Day Event!
These cities and states proclaimed June 11 KBG syndrome awarness day!