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.
Put Hope for HH on the MAP! Download the Hope for HH flyer and take a photograph at home and during holiday travels. Let’s see how many places our community spans around the world.
Thanks to John & Kim Gregory, dear friends of Erica & Perry Webster, who walked in memory of Grace Webster during a walk at Disneyland – who put Hope for HH on the map in sunny California.
We understand the importance of connecting with others when it comes to dealing with the many complicated aspects of HH. Join our Forum and become a part of an amazing international support community.
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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To stay abreast of what is happening in hypothalamic hamartomas, visit the Chairman’s Corner. Read the latest information from our Chairman Dr. Rekate or our guest authors.
I was born 30 years ago with my umbilical cord rolled up around my neck twice, all blue, and quite a big head. My mother noticed early on lots of shortness of breath and cramps. I had my first tonic-clonic seizure when I was 18 months while my father was taking some photos in my grandparents’ garden. Read more..
Just a few days remain … Our Hope Phoenix fundraiser for Hope for HH – Go to www.ourhopephoenix.org and vote for Hope for HH! You don’t have to give any personal information and Hope can win $5000! Vote everyday through November!
Just a few days remain...Support the Quilter's Bee Giving Fundraiser and raise money for HH. 100% of the proceeds of the sale of raffle tickets is donated to charities. To buy a raffle and support HH, click here. Visit Marjorie Busby's blog to read more about how she has turned her passion for quilting into a donation for HH.
Looking for the perfect holiday gift? How about a Hope for HH t-shirt or belt buckle for yourself or a loved one.
Jake Case (1982 - 2012) Read more..
Hope for HH Continues to Raise HH Awareness at Key Conferences
December 6-10, 2013 67th Annual American Epilepsy Society Meeting (Washington, DC)
The AES Annual Meeting brings together epilepsy thought leaders from around the world. The Hoyer Lecture “kicks off” the meeting and is free and open to the public. Live near DC? Come hear Dr. John Pellock discuss Pediatric Epilepsy: Little Steps, Big Challenges on Friday, December 6 from 3:30 to 5:30. For more information, click here and let us know if you can come. Hope for HH Board has Been Busy!
Sept. 20-21, 2013 2nd International Symposium for Hypothalamic Hamartomas (Marseille, France) 35+ of the world’s foremost HH neurosurgeons, epileptologists, neurologists and geneticists gathered together to discuss all aspects of HH. Organized by the Hope for HH Medical Advisory Board in collaboration with Dr. Jean Regis. Thanks Dr. Regis!
Hope for HH Family Forum (Marseille, France) brought together families from France, England, Tunisia, Ireland and the United States for an intimate Q&A session including Drs. Curry, Regis, Rekate and Kerrigan and Hope for HH President, Lisa Soeby. Listen to a podcast (coming soon) of the informative discussion and questions from other HH families.
- Hope for HH would like to welcome Julie Robinson as a new member of our Board of Directors.
Mar. 22, 2014
National Walk for Epilepsy (Washington, DC) Hope for HH is gearing up for the annual walk. Join our team here.
May 17, 2014
M-O-O-Ving Thru’ The Mud with Landon (Gainesville, TX)
This fun mud run – in it’s third year - for ages 4 - 14yrs benefits Hope for HH and is an awesome good time! http://www.mudwithlandon.com/