Our all-volunteer board has a deep respect and gratitude for the community volunteers working to build awareness for KBG syndrome. Learn about how you can help.
The KBG Foundation was founded in June 2015 as a 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, were told to use social media and online searches to learn more and find support for his newly found diagnosis. They thought, why USE social media when someone needs to BE the social media outlet for families and researchers alike.
The gap in information became very apparent when reaching out to others for their stories about being diagnosed with KBG Syndrome. More than most of the families did not receive an early diagnosis but instead learned about the ANKRD11 mutation many years later. Since the symptoms vary greatly, it is crucial to raise awareness about KBG worldwide. There are clusters of areas around the globe that have 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 'experts' in KBG and see the majority of patients in that area. While KBG is not usually a life-threatening condition, it can be debilitating and isolating. We aim to improve the quality of life for KBG families and ensure the standard of care and eventually a cure.
mission & vision
The KBG Foundation is dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG syndrome.
Our dedication to enhancing the research into KBG syndrome and how to help those diagnosed with the condition is no small task. Join the research team.
ANNETTE MAUGHAN, CEO, FOUNDER
Looking for NPO Volunteers!
We are always on the lookout for dedicated people wanting to assist in raising awareness for KBG and providing support to those that have it. Do you think you have what it takes to be an outstanding advocate?
Contact email@example.com and tell us how you think you can help the KBG Family.
Are you a smartypants?
Researchers and PhD's needed to help diagnose, treat and potentially cure KBG. Sign up to speak at our events, help out on the Board or edit everything wrong with the site. We aren't kidding about that smartypants thing.
Contact: firstname.lastname@example.org to learn more.
Donate to a great cause!
Help the KBG Foundation support her families, fund research and eventually find a treatment!
The truly international impact of KBG has yet to be felt. Many patients worldwide remain undiagnosed throughout their lives because the severity of the symptoms is so varied. The KBG Foundation is reaching out these patients, their families and the Doctors helping them navigate the syndrome to enable awareness and find better treatments and eventually a cure.