Hope for Hypothalamic Hamartomas is led by a volunteer Board of Directors comprised of five parents of individuals with HH.

Many volunteers have walked alongside us since 2009 and we appreciate the time and impact of their contributions.

Executive Board and Directors

President, Co-Founder | Star, Idaho, USA

In 2005, Erica’s fourteen month old daughter, Grace, began to show the first signs of having a hypothalamic hamartoma when her pediatrician diagnosed her with precocious puberty after finding blood…

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Vice-President, Co-Founder | Eagle, Idaho, USA

Lisa’s son CJ was diagnosed with an HH in 1997, when he was just 3 months old. The process of getting doctors to listen and ultimately getting a correct diagnosis…

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Treasurer | New Brunswick, Canada

Kimberly is the proud mother of three children. Her middle child, Colin, was born with an extra pinky finger, some abnormal toe formations, and an “unusual cry”. At 4 months…

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Secretary | Dighton, Massachusetts

Michelle is a proud mother of three young children. Her son, Jaxon was first noticed to have some abnormalities in utero. Jaxon’s accurate diagnosis was extremely difficult to get. He…

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Board Members

Board Member

Angela is mother to a 13 year old child who was diagnosed with HH at age 3.  After two laser ablation surgeries through Texas Children’s Hospital and the ketogenic diet for…

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Board Member, Hope For HH UK Partner | London, United Kingdom

Emma’s son Charlie was diagnosed with HH when he was 8, after years of misdiagnoses. As a result of her experience she joined Hope for HH as it was set…

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