Izabella Michele Santos Doré passed away on October 18, 2016 due to complications of hypothalamic hamartoma. Izabella is missed each and everyday by her family and all those who were blessed to have known her. “They that love beyond the world cannot be separated by it. Death cannot kill what never dies.” –…
Gavin’s Story Gavin was born on time and had a normal delivery. From the time he was about two weeks old we noticed him doing a sort of grunting mixed with squinting his eyes, like he was in pain. We noticed it happening quite frequently so we brought it up to his pediatrician at his…
For approximately one third of people with epilepsy, their seizures cannot be controlled with the current regimen of anti-epileptic drugs (AEDs). Hypothalamic Hamartomas are no exception to this statistic. Studies are on-going to test the efficacy of cannabidiol, or CBD, in syndromes similar to HH. The following is taken from a presentation at the American…
If you or a loved one have a hypothalamic Hamartoma (HH), this is the not to miss event of 2017. Join Hope for HH in Washington, DC for a day and half of information, support, and community at the DC Family Forum, Dec. 2-3. The event will include an update on the most current information…
Hope for HH is excited to update everyone on the work Dr. Varina Boerwinkle, from Texas Children’s Hospital (TCH), is doing in her research to study resting state functional MRI (rs-fMRI) and Hypothalamic hamartomas. Initially, Dr. Boerwinkle performed the first ever group wise study examining the pathway of epileptogenic activity from the hypothalamus to the…
If We Can Create an Animal Model for HH We Will Significantly Improve Our Understanding of the Condition and the Best Interventions The search for new treatments for the seizures and cognitive deficits resulting from hypothalamic hamartomas has been hindered by a complete lack of animal models of this condition. The research proposed here hopes…
MEET OUR DC FAMILY FORUM SPEAKERS – DR. KERRIGAN In this series, we will introduce you to the experts inside and outside of the HH community who will be presenting at the DC Family Forum on December 3rd. Our first presenter is Dr. John (Jack) F. Kerrigan is familiar to many HH patients and families…
Hope for HH is excited to announce our 2017 Family Forum in our nation’s capitol, Washington DC. The DC Family Forum welcomes all patients, caregivers and families touched by HH to join together for information, support, and community. This year’s Forum will include a brief update on the latest in HH treatment and research but…
HUGE THANKS to ALL around the nation’s capital and around the world who walked and wore purple on Saturday and Sunday for epilepsy and Hope for HH. Special shout outs to those below. If we missed you, please post your pics to Hope For Hypothalamic Hamartomas Facebook page Arizona – Kathy & Colby Jensen, Lisa…
For many individuals with HH, transitions can be difficult. It can be a challenge to transition from one activity to another, transition from one school to another, and it can be especially difficult to transition from adolescence to adulthood. Each of those could be a blog itself. But today, I am talking about one of…