Ilene Miller & Lisa Soeby put HH on the map at AES San Diego, CA December 2012.

December 2012


Don't miss the recently updated Hope for HH website including:  new headlines, featured family (Cecile Pierron), and so much more.  

If you missed the live HH Symposium for Patients & Caregivers co-sponsored by BNI and Hope for HH in November 2012, you can watch it all here.  The speakers covered every topic from the latest surgical breakthroughs to legal considerations as HH children transition to adulthood. Dr. Kerrigan presented a great overview. Other highlights included talks from: 

Put HH on the map in 2013.  

John & Kim Gregory walked in memory of Grace Webster and put HH on the map Disneyland (CA).
We are an international community and we need to take a stand to face down this condition. Download our flyer and take a picture in your home town, with your doctor, at your school or on vacation. Post your photo to our facebook page today and let's sp
Dr. Wilfong (TX Children's Hospital) puts HH on the map in San Diego, CA @ AES 
read the word about HH until we can find a cure.

Want to get involved with Hope for HH in 2013?

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If you have any questions or comments, please email . See something you like - let us know that too! 

Wishing Your Families a Happy & Healthy New Year!
Hope for Hypothalamic Hamartomas
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, Research Dir.
Wendi Tipps, Fundraising


Medical Advisory Board


Harold Rekate, MD
Chairman (2013-2015)
Chiari Institute
Great Neck, NY, USA

Alexis Arzimanoglou, MD
University Hospitals of Lyon
Lyon, France

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

Daniel Curry, MD
Texas Children's Hospital
Houston, TX, USA 

John Fulton, Ph.D.
BNI at Phoenix Children's
Phoenix, AZ, USA

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

Jack Kerrigan, MD, 
Past Chairman (2010-2012)
BNI at Phoenix Children's 
Phoenix, AZ, USA

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

Jean Régis, MD
Timone University Hospital 
Marseille, France 

Jeffrey V. Rosenfeld, MD
The Alfred Centre
Melbourne, Victoria, AU

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Hope For 
Hypothalamic Hamartomas

P. O. Box 721

Waddell, Arizona 85355


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