Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
Report Finds Epilepsy Remains Widespread The Division of Population Health of the Centers for Disease Control released a study titled “National & State Estimates of the Numbers of Adults and Children with Active Epilepsy – United States, 2015” which provides national and for the first time, state-specific estimates of epilepsy. The data show the…
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…
News, Research & Resources recently launched new content on the Hopeforhh.org! If you haven’t visited the Hope for HH website recently, we encourage you to check out the newly updated and reorganized section on News, Research and Resources. You will find the following information: News includes articles reported in the press & archived Hope…
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…
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…
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…
Hope for HH seeks opportunities to better understand the many facets of living with HH and epilepsy. We frequently share research projects that encourage patients and caregivers to answer questions that will lead to a better understanding of particular topics. The Rare Epilepsy Network in conjunction with The Children’s Hospital of Philadelphia (CHOP) is…
Feb 28 is Rare Disease Day – HH is Not Alone A disease, disorder, illness or condition affecting fewer than 200,000 people is considered RARE. There are 7,000 rare diseases and disorders. 1 in 10 Americans or 30 Million people have a rare disease More than ½ of people with rare diseases are children. Hypothalamic…
Our friends at NORD & Oregon State University are launching a first of its kind quality of life study among adults with rare diseases called “AWaRDS Study: Adults with Rare Disorders Support.” The study seeks to better understand the psychosocial support needs of people living with rare disorders and is looking at many diseases and…
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…
