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.

July 10-12 Meet other HH families!

Hear the latest on HH treatment and research from top experts!

Join us for the 2015 HH Family Conference July 10-12th 2015 in Houston, Texas! The conference is being hosted on Saturday by Texas Children’s Hospital and will include a full day of talks by top doctors on the latest in HH treatment and research! There will also be fun activities and events to allow families and individuals to meet and share! We will be staying at the beautiful Houston Marriott Medical Center right across the street from the hospital. A special rate and reservation link will be available through the hotels website next week. Watch for our announcement on our website and Facebook page and reserve your space early. The block of rooms is limited. Email Kathy Jensen or Lisa Soeby with any questions.

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.

Five year old Varvara Finogenova is seizure free after thermal coagulation done by Dr. Kameyama in Japan this summer.

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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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/

 

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.

 

 

Two Year Follow-up and Good News for Christopher

It has been awhile since I have written. I guess since Christopher’s laser ablation surgery he has been doing so well and there has not been much to say. He completed kindergarten this past school year without any learning problems. He has become a avid reader and continues to love being a football player. He has been off all seizure medication for over a year now and his EEG’s remain completely normal. No sign of HH at all. Read more..

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..

 

68th American Epilepsy Society Annual Meeting(Seattle, WA) December 5-9 Live in/near Seattle? Like to join us for coffee? Email Lisa Soeby for more information.

 

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/

9th Annual National Walk for Epilepsy (Washington, DC) April 11 Hope for HH is gearing up for the annual walk. For more information click here.

2015 HH Family Conference (Houston, TX) July 10-12

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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