2012 Walkers
May 2012


Don't miss the recently updated Hope for HH website including:  new headlines, featured family (Webster family), an article by Dr. Harold Rekate, an in memory section, list of HH treatment centers, news and research articles, and so much more.  

We are also thrilled to announce the launch of the Hope for HH Blog. Sign up to receive blogs by caregivers and others touched by HH. Let us know if you would like to guest blog too!

Looking ahead - Good luck to the Tipps family on 5/19 with their M-o-o-ving Thru' The Mud fundraiser for Hope for HH.  Save the date for the HH Symposium for Patients & Caregivers on 11/10/12 in Phoenix, AZ. Stay tuned for stories on HH in ABC 20/20 (tentatively mid-May) and the New York Times. 
Hope Welcomes 3 New
Medical Advisory Board Members


We are thrilled to announce 3 new Medical Advisory Board Members including: 


Daniel Curry, M.D. (Neurosurgeon)

Director, Functional Neurosurgery and Epilepsy Surgery Program

Texas Children's Hospital, Houston, TX, USA


John Fulton, Ph.D. (Neuropsychologist)

Barrow Neurological Institute

Phoenix Children's Hospital, Phoenix, AZ, USA


Jeffrey V. Rosenfeld, MD (Neurologist)

Director, Monash University Institute for Brain Development and Repair

The Alfred Centre, Melbourne, AU


Got Feedback?
If you have any questions or comments, please email info@hopeforhh.org . See something you like - let us know that too! 

Happy Spring!
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, Research Dir.


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

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

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

Jean Régis, MD
Timone University Hospital 
Marseille, France 

Harold Rekate, MD
Chiari Institute
Great Neck, NY, USA
Jeffrey V. Rosenfeld, MD
The Alfred Centre
Melbourne, Victoria, AU

Save The Date


11/10 Hypothalamic Hamartoma Symposium for Patients & Caregivers (Phoenix, AZ) 


11/30 American Epilepsy Society Meeting (San Diego, CA)


for more info visit


Hope For 
Hypothalamic Hamartomas

P. O. Box 721

Waddell, Arizona 85355


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