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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!
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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!
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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:
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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
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Got Feedback?
If you have any questions or comments, please email [email protected] . See something you like - let us know that too!
Happy Fall!
Hope for Hypothalamic Hamartoma
Board of Directors
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Mission
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.
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Board of Directors
Lisa Soeby, President
Ilene Miller, VP & Treasurer
Erica Webster, Secretary
Emma Kane |
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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 R�gis, MD Timone University Hospital Marseille, France |
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