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Website Update - Fall 2011


Don't miss the recently updated Hope for HH website including HH Headlines and our new featured family - Landon Tipps. Many of you have been following Landon's courageous story on facebook and in the news!

Also, there is a new article by Dr. Jack Kerrigan, Chairman of our Medical Advisory Board. And we are pleased to introduce our first in a series of endocrinology articles by Medical Advisory Board member, Dr. Maya Lodish. In this article, Dr. Lodish focuses on precocious puberty.
Breaking News


For anyone that did not hear - there was national breaking news for epilepsy and HH patients recently when Texas Children's Hospital used state of the art minimally invasive laser ablation surgery to treat hypothalamic hamartomas.  Links to these stories can be found on the website as well.

Seizure Tracker recently added gelastic seizures to their FREE comprehensive tools for tracking seizures and helping patients and doctors understand the relationship between seizure activity and anti-epileptic medications and other symptoms. After you set up an account and begin logging seizures, gelastic seizures is one of the seizure choices. Thanks ST!
Research, News & Information
As new research, news and information becomes available, you can be sure Hope for HH will bring this information to our community. Visit the links below and look for the articles marked "new." 

Research updates include:
Want to Get Involved?

Did you know Hope for HH is run by a small group of committed volunteers who are also HH parents and caregivers? Looking for a way to get involved?  

  • LIKE Hope for HH on facebook
  • Volunteer your time & talent 
  • Raise awareness of HH by sharing your story 
  • Educate others about HH by delivering the HH flyer to your family, friends, educators, doctors, and community
  • Make a donation  
  • Help spread the word and simply share this Hope For HH update with the link below
Got Feedback?
If you have any questions or comments, please email . See something you like - let us know that too! 

Happy Fall!
Hope for Hypothalamic Hamartoma
Board of Directors 




Provide information and support to HH patients, caregivers, and healthcare providers and to promote research toward early detection, improved treatments, living with HH, and cure.



Board of Directors


Lisa Soeby, President

Ilene Miller, VP & Treasurer

Erica Webster, Secretary

Emma Kane


Medical Advisory Board


Jack Kerrigan, MD, Chairman
BNI at Phoenix Children's 
Phoenix, AZ, USA

Alexis Arzimanoglou, MD
University Hospitals of Lyon
Lyon, France

J. Helen Cross, MD
UCL Institute of Child Health
London, England

Simon Harvey, MD
Royal Children's Hospital
Melbourne, Australia

Maya Lodish, MD
National Institutes of Health
Bethesda, MD, USA

Jean Régis, MD
Timone University Hospital 
Marseille, France 
Hope For Hypothamalic

P. O. Box 721

Waddell, Arizona 85355


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