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. Each quarter there will be new information from Dr. John Kerrigan or 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..
Jake Case (1982 - 2012) Read more..
Ilene Miller and Lisa Soeby attended the 2012 American Epilepsy Society Meeting in San Diego. The above photos includes (left to right) Lisa Soeby, Ilene Miller, Dr. Story Landis (NINDS Director), Suzanne Axelrod (CURE) and Brandy Parker. See more photos from the event here.
- Barrow Neurological Institute and Hope for HH Foundation Hypothalamic Hamartoma hosted an amazing symposium and live webcast for Patients & Caregivers on November 10,2012.
- For additional photos, click here. Huge thanks to all of the doctors that presented including MAB members Drs. Kerrigan, Curry, and Fulton, and to Maggie Bobrowitz and Lisa Soeby for a very informative day. To watch the recording of the symposium, click here.
- Hope for HH extends its most heartfelt sympathies to Merodene and Bruce Case in memory of their beloved son, Jake, who passed away on September 26, 2012. Read Jake's Hope For HH Memorial here.
- Meet our new Featured Family – Cecile Pierron – and her courageous story as an HH patient, mom and advocate. Want to share your story, click here.
- Hope for HH would like to welcome Wendi Tipps as anew member of our Board of Directors.
- Put Hope for HH on the MAP! Download the Hope for HH flyer and take a photograph at home and during holiday travels.
- Are you getting the Hope for HH blog? If not, subscribe here. Like to write for our blog, contact mbusby@hopeforhh.org.
- In case you missed it – ABC Nightline aired a segment on HH on June 1, 2012 following the journey of two courageous HH families. Watch the program below (mouseover to display video control buttons) A larger version of the program is available here.
- November 30 - December 4, 66th American Epilepsy Society Annual Meeting (San Diego, CA).
- April 20, 2013 National Walk for Epilepsy (Washington, DC) – Join Team Hope for HH!
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