About Us

The foundation was started by two mothers with children affected by the TBC1D24 mutation.  They found each other and an amazing online community, a small but mighty group. 

With the blessing of other affected families, the TBC1D24 Foundation was created with three simple(-ish) aims:

1. A landing place for those with a recent diagnosis to connect them with appropriate community members, resources, and information. 

2.  To raise awareness about TBC1D24 and it's symptoms, to educate affected families and those who treat and support them.


3.  To fundraise to support and further research finding more information and effective treatments. 


Why A Zebra?

An aphorism was coined in the late 1940's when medical interns were instructed "when you hear hoofbeats, think of horses not zebras."


The rare disease community has come to identify with the zebra as we're the exceptions to the usual rules.