Introduction Emma Nott, Hope for Hypothalamic Hamartomas board member, represented our community at the recent EpiCARE Annual General Meeting held in Lyon, France between 16-18 February 2022. What is EpiCARE? EpiCARE is the European Reference Network (ERN) for rare and complex epilepsies. Formed in 2017, it is a network of highly specialized health centers…
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…
One of our favorite organizations, CURE (Citizens United for Research in Epilepsy) is assisting Johns Hopkins in promoting its EpiWatch research study which will collect data about seizures and seizure treatment. The intent of EpiWatch is to provide those with epilepsy a means to track seizure activity, medications, and possible triggers or side effects as…
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…
March 26 is International Purple Day – the international color representing epilepsy awareness. Launched in 2008, Purple Day was conceived by then nine-year old Cassidy Megan of Nova Scotia who wanted to increase worldwide awareness of epilepsy. Her goal was to dispel myths and build community for people living with seizures. She was a huge…
You may be wondering why we keep posting about the WALK? The easy answer is it’s something we can all do! On March 25th, thousands of people will gather in Washington, DC for the 11th Annual Walk for Epilepsy. This is the 10th year Hope for HH will have a team of walkers wearing our…
In honor of International Epilepsy Day, an event created to promote epilepsy awareness in more than 120 countries, Hope for HH would like to highlight and thank our own international support community! In the last 5 years the Hope for HH Medical Advisory Board (MAB) has grown from a mostly US based group of…
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!…
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…
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…
