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 in her diaper. As a result of discovering the precocious puberty many follow up tests were conducted and eventually a MRI confirmed the rare brain…

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 at that time was extremely challenging. Lisa and her family traveled to Royal Children’s Hospital in Melbourne Australia for surgery, as there were no HH…

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 old Colin was diagnosed with a kidney condition, at 11 months he was diagnosed with HH then shortly after he was diagnosed with Pallister-Hall syndrome.…

Secretary | 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 first surgery. He had two weeks seizure free before the gelastic seizures returned. Colby had his second surgery in the spring of 2014 and third…

Director of Awareness, 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 up and has worked with the other Directors to support patients and caregivers, to spread awareness amongst the medical profession and to find a cure…