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 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.
Perry and I had married in early 2002 with the hopes of beginning our family immediately. Unfortunately, we experienced two back to back miscarriages in 2002 and we felt the dreams of a family were slipping away from us. Read more..
Grace Webster (2003 - 2011) Read more..
- Landmark epilepsy report released! Soeby quoted in intro! Epilepsy Across the Spectrum: Promoting Health and Understanding.
- More than 100 people walked for HH at the National Walk for Epilepsy (Washington, DC).
- Mark Miller, Glen Schallman, and CJ Soeby
- Check out Neurology Now interview with Lisa Soeby. Neurology Now is an award-winning magazine. For a free subscription to this mag, visit http://www.neurologynow.com/
- The HH community extends its condolences to the Webster family at the loss of their daughter, Grace. Read about the Grace’s family’s HH journey and another article in FACES E-Newsletter. Share your HH story and photos, visit Featured Family.
- Read Chairman Corner Article by Guest Contributor Harold L. Rekate.
- Read Emma Kane’s testimonypresented at the XX* Stereotactic & Functional Neurosurgery Conference in Marseille, France.
- Check out news stories on the Tipps & Bastolla families and research articles too!
- May 19, M-o-o-ving Thru’ The Mud– a fundraiser for Hope for HH by The Tipps Family (Lindsay, TX). Plan your own fundraiser.
- November 10, Hypothalamic Hamartoma Symposium for Patients and Caregivers hosted by Barrow Neurological Institute (BNI) and Hope for HH. Attend in person or via live broadcast. More details soon.
- November 30 - December 4, 66th American Epilepsy Society Annual Meeting (San Diego, CA).
SAVE THE DATES