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.

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, Hope For HH UK Affliate Advisor | 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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Director of Support | Phoenix, Arizona, USA

Kathy is the mother of two very active boys. Her family started their HH journey with their youngest son, Colby, in 2012. In the fall of 2013 Colby had his…

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Volunteers

  • Whitney Barnett – Patient Support
  • Mark DeBowes – Operations Committee Member
  • Kristy DeBowes – Information Committee Member
  • Angela Donn – Patient Support
  • Tomas Lampo – Information Committee Member
  • Damien McCann – Finance Committee Member
  • Kristy Swartz – Board Administrative Assistant
  • Roza Wu – International Outreach Committee Chair

Pro Bono Services

  • Mike Conroy – Digital and Print Design
  • Lawrence Prosen & Kilpatrick Townsend – Legal