About the Foundation

The KBG Syndrome Foundation was founded in June 2015 as an affiliate of the Epilepsy Association of Utah after CEO and President Annette Maughan's son was diagnosed with the condition. While speaking with the geneticist, she and her husband, Glenn, the KBG Foundation Board Chairman, were told to use social media and online searches to learn more and find support for their son’s new and unfamiliar diagnosis. At a time when so little information was readily available to people with a diagnosis, they decided they would both launch the KBG Foundation and create the needed online communities for people to share their experiences, ask questions, and offer support to one another. 

Today, the KBG community is increasingly global. There are clusters of areas around the world where we see a higher concentration of diagnosis. We surmise that is due to a few doctors, or one doctor, in that area learning about KBG and identifying the presentations that can go overlooked. These areas tend to have one or two clinicians with a particular interest in KBG and see the majority of patients in that area.

The KBG Foundation, now an independent, all-volunteer, 501(c)(3) organization, continues to make connections among patients and the research communities in the United States and beyond, because we know that every link matters. The KBG Foundation is dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG syndrome.​​