Hypothalamic Hamartoma (HH) is a benign tumor-like malformation that causes a syndrome characterized by: 1) treatment-resistant epilepsy, beginning with gelastic (laughing) seizures, but later including other seizure types, 2) developmental and cognitive deficits, 3) behavioral problems, including rage attacks, and 4) endocrine disturbance, most commonly central precocious (early) puberty.

We are excited to announce that the Speakers' presentations from the recent Hope for HH Family Conference in Houston are now available for viewing on our YouTube Channel {click below}!

Please share with your providers and family members who are not well informed! There is exceptional technical information presented in a very understandable format!

Hope for HH is grateful to the volunteers, sponsors, and participants in this year’s Mo-o-ving Thru the Mud Run with Landon for the incredible donation of $25K! The event had to be rescheduled for rain – lots of rain in fact - but that didn’t stop friends and families from showing up and getting even muddier later!


Providing information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and promoting research toward early detection, improved treatments, living with HH, and cure.

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All HH patients & caregivers eligible

Hope for Hypothalamic Hamartomas, The Epilepsy Foundation & 9 other rare epilepsy organizations were awarded a $1M grant to launch a rare epilepsy registry!! We challenge every HH patient and caregiver to complete the REN survey so we can better understand what causes HH and how to cure it! Get started here: https://ren.rti.org/

Hope for HH is honored to announce our new Medical Advisory Board Chairman – Dr Helen Cross. Dr Cross has been a long time advocate for individuals and families affected by HH and has been a driving force for improvements in treatment as well as research. Welcome Dr Cross and congratulations on your recent award – the OBE (Officer of the Most Excellent Order of the British Empire) for her services to children with epilepsy in the Queen of England's Birthday Honours!



Meet Carson

Carson is a fun loving, outgoing, and genuine spirited 4 year old boy. He absolutely loves his family, the color blue, motorcycles and water. He has 2 very caring and loving sisters, he is the youngest of 3. Carson has already been through more than some kids (or most people) have to go ever go through. Shortly before Carson was born he was discovered on a routine ultrasound that he had a cyst in his brain. Read more..


Grace Webster(2003 - 2011) Read more..

OBE Honor for Professor Helen Cross

Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy, Deputy Head of Developmental Neurosciences Programme of the UCL Institute of Child Health and Honorary Consultant in Pediatric Neurology at Great Ormond Street Hospital NHS Trust, London and Young Epilepsy, Lingfield, received an OBE in the Queen's Birthday Honors for her services to Children with Epilepsy.

Professor Cross said “huge progress has been made in the diagnosis and management of epilepsy over the past 20 years. This has required national and international collaboration, as well as constant translation to clinical practice. This award is a great honour, and which I dedicate to all the children with epilepsy with whom I have had contact over the years, who continue to teach us so much more and for whom we strive for better outcome".

Professor Cross received the OBE for services to children with epilepsy. She has published research papers on seizures and neuropsychological and behavioural outcomes in children who have undergone brain surgery for treatment of their epilepsy. Her research has also focused on improving outcomes for children with early onset epilepsy. In addition, she conducted the first randomised controlled trial of the ketogenic diet in the treatment of children with drug resistant focal epilepsy. Click here for more information

REN - $100 Gift Card go to HH Families!

Congratualtions to REN participants Cathy Hoyda, Kathy Jensen and Sally Waters! They all were selected to win a $100 gift card for participating in the REN survey!

      American Epilepsy Society Meeting (Philadelphia, PA) Dec 4-8, 2015

      Check out national broadcast of The Doctors featuring a story about Barrow neurosurgeon Dr. Peter Nakaji and two of his recent HH patients. The segment shared the new laser surgery which is minimally-invasive and uses MRI-guided technology to destroy the HH tumors. Click here.

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