Last Updated: 25 January 2021 1. Facebook The official Hope For Hypothalamic Hamartomas (Hope For HH) Facebook page was created to provide people with an interest in Hope For HH information about our nonprofit organization. This page is monitored and managed by Hope For HH. To learn more about Hope for Hypothalamic Hamartomas (Hope For HH) visit https://www.hopeforhh.org/. We…
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This World Wide Web site located at https://www.hopeforhh.org/ (“Site”) is offered by Hope for Hypothalamic Hamartomas (“Hope for HH,” “we,” “us,” or “our”) to you (“you,” “your,” and “user”) for your personal use and information. The Site contains information including without limitation data, text, photographs, graphics, messages, other materials, or materials submitted by other users (“Content”) in…
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…
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…
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.…
Kathy served as a Hope for HH board member from 2015-2022
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…