Hope for HH participates in key epilepsy wide initiatives including the Rare Epilepsy Network (REN) – a network of 29 rare conditions that all share seizures as a common side effect. The REN is collecting patient data about these conditions and leading critical research toward improving side effect management and care. We know there are…
Hope for Hypothalamic Hamartomas (Hope For HH) is happy to announce the new HH Program Coordinator for PCH – Diana La Rocque RN, BSN, CPN Ms. Diana LaRocque is the neurology nurse program coordinator for Barrow Neurological Institute at Phoenix Children’s Hospital. She specializes in coordinating patient care across the healthcare continuum for patients with…
In June 2017, Epilepsia, The Official Journal of the International League Against Epilepsy (ILAE), published a Special Issue titled: Hypothalamic Hamartomas and Epilepsy. Sincere thanks to international experts and HH Medical Advisory Board members Drs. Jean Regis, J. Helen Cross (Chair) and Jack Kerrigan for editing the supplement and bringing it to fruition. The…
Using Focused Ultrasound to Treat Hypothalamic Hamartomas Interview with Dr. Travis Sean Tierney, Pediatric Neurosurgeon Nicklaus Children’s Hospital You recently used Focused Ultrasound to treat a hypothalamic hamartoma. What is FUS and how does it work? Has it been used to treat other diseases? Focused Ultrasound is a surgical method that uses highly focused acoustic…
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…
Congrats to Hope for HH Medical Advisory Board members Drs. J. Helen Cross & Alexis Arzimanoglou, editors of the newly released publication, “Epilepsy Surgery In Children: Time is Critical.” The book includes contributions from other MAB members including Dr. Jack Kerrigan and A. Simon Harvey, as well as HH Symposium participants including Drs. Sarah Ferrand-Sorbets,…
Dr. Isabel Heyman presented findings from a recent research study at The 3rd Annual HH International Symposium (London, Sept. 2016). In brief, Dr. Heyman analyzed 46 patients and found greater than 70% had behavioral/emotional disorders (including ADHD, anxiety, mood, etc) and 46% exhibited rage/aggression. 50% of patients also had cognition issues from mild to severe.…
The Rare Epilepsy Network (REN) is a consortium of partners committed to conducting research to improve outcomes of rare conditions associated with epilepsy and seizures. Together, we are committed to addressing the urgent health challenges of our rare epilepsy community by engaging patients and caregivers, making data available to researchers, and investigating causes and consequences…
The Epilepsy Leadership Council (ELC) (formerly Vision 20-20) is a coalition of professional, governmental, and non-profit organizations representing patients with epilepsy and their families. The mission is to serve as a mechanism through which organizations can work on shared goals and projects that will have a positive impact on the lives of individuals with epilepsy,…
Inspired and Hopeful. At the conclusion of the five days, the Hope for HH Board of Directors felt a new sense of energy, inspiration and most of all HOPE for what the future holds for research, treatment and eventual cure of epilepsy within our hypothalamic hamartoma community and those of other rare epilepsy disorders. The…
A collaboration among researchers from Melbourne (AUS); New York (USA), Phoenix (USA) and others has led to a new discovery in HH. Read below to learn more. Listen to an interview with 3 of the lead researchers. You can also read the original article as reported in The American Journal of Human Genetics (2016). This…
What is rs-FMRI? And why is it relevant to HH? Hear how Dr. Varina Boerwinkle, Pediatric Neurologist, Director of Resting State Functional MRI, Texas Children’s Hospital is using resting state functional MRI at Texas Children’s Hospital to better target HH for surgery like laser ablation. More than 70 patients have been tested. You can listen to…
