A hypothalamic hamartoma (HH) is a rare benign brain tumor or lesion of the hypothalamus. The hypothalamus is located at the base of the brain, and is responsible for many of the “automatic” functions of the brain including hunger, thirst, temperature, passion, and hormone regulation. A hypothalamic hamartoma can cause many types of seizures, precocious (premature) puberty, cognitive deterioration, and severe behavioral difficulties known as rage behaviors.

As friends, families, and individuals affected by HH, we understand the importance of connecting with others when it comes to dealing with the many complicated aspects of HH. Our Forum is designed to help you connect with others who may be dealing with similar issues and concerns. Join our Forum and become a part of an amazing international support community.

Hope for HH seeks to provide information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and to promote research toward early detection, improved treatments, living with HH, and cure.

This site includes files that require Adobe Reader.

 

To stay abreast of what is happening in research for hypothalamic hamartomas, visit the Research Corner.

 

Each quarter there will be indepth discussions of the latest discoveries in HH

basic and clinical research from Dr. John Kerrigan.

 

John F. Kerrigan, MD, Director, Hypothalamic Hamartoma Program, Phoenix Children's Hospital

 

 

Joseph, we call him JoJo, was born on November 19, 2009. He is our second son. Our family consists of our oldest son Nick (5 years old), my wife, Stacie and me, Joe. We live in Kinnelon, New Jersey, which is about 35 miles outside of New York City.

 

• JANUARY 2011Hope for HH attended the 65th annual American Epilepsy Society Meeting in Baltimore, MD December 2-6, 2011 to educate international neurologists, neurosurgeons and epilepsy specialists about HH. Hope for HH had a booth that doctors could visit and also had 5 slides that rotated with slides from other volunteer organizations prior to the keynote lecture attended by thousands of doctors and health professionals.
• Other highlights from the meeting included hosting the second annual meeting of Hope for HH’s Medical Advisory Board where plans were made for an international symposium on HH for 2013.
• 
• Moreover, there was a widely reported press conference with MAB members Dr. Jean Regis and Dr. Jack Kerrigan on HH, gelastic seizures, and Gamma Knife Surgery.
• 
• A few articles can be found at: http://www.medindia.net
• Finally, there were several presentations of research findings on HH and related topics (pregnancy, cognitive functioning, depression, SUDEP) which will be added to the Hope website as they become available .
• Meet JoJo - our new Featured Family story. To share your HH story and photos, visit Featured Family.
• Join Hope for HH at the Epilepsy Therapy Project’s Family Day February 4, 2012 in San Francisco, CA.
• Sign up for the National Walk for Epilepsy – Saturday, 3/31/2012 in Washington, DC.
• We are recruiting for an experienced database manager who can donate 5 hours of internet accessed database management time per month. If you are interested in this volunteer opportunity, please contact imiller@hopeforhh.org.
• HH made primetime with a storyline on Grey’s Anatomy, Episode 7 which aired October 27,2011 titled “Put Me In Coach.” Dr. Derek Shepherd (aka Dr. McDreamey) used the transcallosal approach to operate on a girl with HH. This will help raise awareness, expedite diagnosis, and increase research! To see this episode, visit ABC's Grey's Anatomy site.
• Interested in the use of MRI-guided laser neurosurgery for HH – check out Dr. Daniel J. Curry’s (Texas Children’s Hospital) slide presentation.
• 
• Check out a new Endocrinology News article on precocious puberty written by our Medical Advisory Board member Dr. Maya Lodish.