Glenn Maughan
Chairman of the Board / Co-Founder
Glenn Maughan joined the Board of Directors in June of 2015 after his son, Glenn, was diagnosed with KBG Syndrome at the age of 12. His experience in healthcare and natural sciences has helped the Foundation by providing valuable insight and momentum toward research and awareness. Glenn has been instrumental in establishing partnerships with cutting edge technology companies working to reduce the time to diagnosis for rare diseases.
As an experienced CTO and in -demand technology executive Glenn still found time to serve on the Professional Advisory Board of the Epilepsy Association of Utah from 2012-2015 receiving accolades for his work. He was voted Advocate of the Year in 2014 and given the Dedicated Service Award in 2015.
Glenn is a listed co-author of the research paper: KBG syndrome involving a single-nucleotide duplication in ANKRD11
Annette Maughan
CEO / Co-Founder
Annette Maughan is a seasoned CEO, entrepreneur, and brand builder with a history of establishing and leading a range of mission-driven organizations.
Earlier in her career, Annette established Digital Aces, an international neutral host operator and digital infrastructure company. In 2010, Annette joined the Epilepsy Association of Utah as board member before assuming the CEO position in 2012. Co-Founder of Hope 4 Children with Epilepsy, and Professional Advisory Board Member of the Rare and Undiagnosed Network. Annette successfully led the political lobbying efforts of the Epilepsy Association of Utah to the passage of the first restrictive cannabis legislation in the country 2014 - HB105 - Charlee's Law and 2016 - Rescue Medication in Public Schools. Over her six-year tenure, she was able to develop a clear and formalized organizational structure, triple annual income, pass new legislation around Cannabis epilepsy treatments, and generate a 25% increase in membership growth in one year.
In 2015, Annette co-established the KBG Foundation. She is listed co-author on the KBG syndrome research papers:
KBG syndrome involving a single-nucleotide duplication in ANKRD11
and
Tethered cord syndrome in KBG syndrome
Nicole Young
Board of Directors
Taylor Maughan