Hypothalamic Hamartoma Support Page

Barrow Neurological Find out more about the Wonderful Work that Barrow Neurological Institute in Phoenix, Arizona is doing for HH! Erik G. Teen Chat Check out the words and support of Erik, who recently had surgery at BNI, and has started a chat group for all HHUGS teens! Information about HH Find out more about the HH condition, read about the role of the hypothalamus and check out our list of medical articles HHUGS in the News Read about the latest developments in the treatment of HH worldwide and check out our Media Archive Our HH Family Meet some of the children (and adults!) affected by HH Where Are We? HH Contact Families in the US and Worldwide. Other Places to Visit Links to Epilepsy Associations and support groups, epilepsy research and treatment centres throughout the world, and other websites of interest

Welcome! We are a worldwide group comprised of families with a child or adult that has been afflicted with a Hypothalamic Hamartoma (HH).   These benign tumors, which sit close or intertwine with the hypothalamus, usually straddle the optic nerve and make removal difficult.  The tumors cause victims to have gelastic (laughing) seizures, sometimes tonic-clonic and drop seizures, "hypothalamic rage" behavioral problems, and frequently precocious (early) puberty.  Some people with HH are also affected by Pallister-Hall syndrome, an extremely rare genetic disorder. Whilst the seizures resulting from HH are notoriously difficult to control, the good news is that are some things that can be done to ease the problems caused by a HH.  This is where our Group comes in. If you or your child has this condition, and you have not heard of us before, welcome to our Group!  We look forward to interacting with you via daily email, live chats, and in sharing information on how to deal with this terrible syndrome we call "HHUGS" (Hypothalamic Hamartoma, Uncontrollable Gelastic Epilepsy). On this website you will find more information about HH, references to medical articles, and  news about the latest developments in treating this condition.  You can also read the stories of other HH sufferers and have the opportunity to join our HHUGS discussion group, where you can share your thoughts and experiences with other HH families. This Group is truly international. We currently have over 250 member families with 200 kids from around the world, including the United States, Canada, Costa Rica, South America, United Kingdom, Hong Kong, Singapore, Germany, South Africa, Tanzania, Belgium, Italy, Portugal, China, Palestine, Uruguay, Australia, New Zealand and other countries. We've changed the course of medicine by banding together as a group for our kids: From an article by Harvey, Freeman, Berkovic and Rosenfeld of Australia's RCH, creators of the new approach to resecting HH tumors: "We are also grateful to the patients, their families and the Hypothalamic Hamartoma Uncontrolled Gelastic Seizures (HHUGS) support group, who had faith and trust in our epilepsy program and assisted us with collection of accurate clinical information and follow-up; their efforts have definitely advanced knowledge and led to treatment advances in this rare and frequently devastating condition." LATEST NEWS BARROW NEUROLOGICAL INSTITUTE PERFORMING HH SURGERIES IN ARIZONA!  The BNI  hosted the highly acclaimed Professor Jeffrey Rosenfeld for a week on February 17 to 21, 2003, wherein they performed six TC HH surgeries and six new patient consultations. All of the kids did very well to date! Barrow says they can "offer HH surgery to everyone who desires it within three months". This is the news that we have been waiting for and comes thanks to the work of NBC Dateline, and Drs. Spetzler and Rekate and the fine staff at TheBNI, and the tireless work of Jon and Lisa Soeby. See BNI's website for more information and then click on Medical Specialties, Centers and Clinics, and finally Hypothalamic Hamartoma Center. BNI has done well over 100 HH Surgeries (as of Feb 14, 2009). For more information contact Margaret Varland (Neuroscience Program Coordinator) at 602-406-7585. Fax: (602) 728-9003. Email: mvarlan@chw.edu CJ'S STORY FEATURES ON NBC DATELINE (US) Five year old CJ Soeby has been suffering gelastic seizures since birth. On Sunday 3 November, 2002 the NBC Dateline program screened an hour-long special that followed CJ and his parents Jon and Lisa from their home in Phoenix, Arizona to Melbourne, Australia in their quest to cure their son. The program documented the pioneering work of Prof Jeffrey Rosenfeld, Dr Simon Harvey and the Australian team who, since 1997, have operated on more than 30 children with HH. You can read the transcript from the Dateline program by going to CJ's "Dateline" page on this website. To find out more about CJ and see photos taken from his Melbourne trip click here. PROF ROSENFELD OPERATES IN SINGAPORE AND UK In September 2002, Prof Jeffrey Rosenfeld visited Singapore and the United Kingdom to perform HH surgery on five patients. You can read about one of these patients, 19 year old Phillip Mountford, in our "HHUGS In the News" section here. If you would like more information about HH, you can contact our HHUGS Administrator and President of the HH Support Group: Carl Christy 209 Locke Lane, Phoenix, Oregon 97535 USA Telephone: 541-821-5889 Email: carl@hhugs.com Please Email me directly with some of your HH particulars to sign up with the discussion group! This page was last updated on: 02/14/2009 Visitors: Webmasters: Craig Faulkner/Carl Christy. Please email to carl@hhugs.com for comments or additions With special thanks to Jill Potts, Founder of The Joshua Potts Foundation John Lamp & Daryl Rue, HHUGS Founding Fathers. The HHUGS Family remember with fondness and love: Joshua Potts, 23 July 1988 - 25 June 1999 Curtis Lajeunesse, 10 September 1996 - 26 July 2000 Logan Nichols, 28 June 1983 - 9 September 2001 Heather Maxwell, 12 June 1980 - 17 April 2001 Tony Hennes, 21 May 1978 - 24 April 2002 William J. Sansalone, 24 May 1995 - 29 July 2005 Anthony Johnson, July 2 1993 - July 14 2007 Nicholas Bernstein Nov 19, 1974 - October 26, 2007 Nicholas had surgery with Dr. Rekate on November 2004, and passed away after a long struggle from complications  of the epilepsy and the surgery. He was the light of our lives,  and an inspiration to everyone he knew. -Penny and Vic Bernstein