March 25th is the National Walk for Epilepsy in Washington DC This annual walk has very special significance for Hope for HH – it is where two of our Founders – Ilene Miller and Lisa Soeby met to walk with their boys to raise awareness about HH and ended up committing to starting a Foundation!…
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,…
Carrie’s Journey We are excited to introduce Carrie – an adult with HH and the Director of our Hope for HH UK Affiliate! Four years ago was pretty much the worse experience of my life. I was hoping to have a temporal lobectomy to stop my daily seizures, after believing for 30 years that my…
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…
Jacob’s Journey Jacob was born April 11, 1998. He was such a cute bundle of golden hair. We took him home and he would make these funny noises, especially when he was sleeping. It sounded like laughter but we just thought he was a strange little one. Fast forward a couple of years when he…
As Epilepsy Awareness Month draws to a close, all of us here at Hope for HH want to thank everyone that helped us get the word out and raise awareness in November. It was a great response! You engaged through social media, initiated the important conversations with professionals, and shared your thoughts and experiences with…
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…