August 2012


Don't miss the recently updated Hope for HH website including:  new headlines, featured family (Evins family), a new article by Hope for HH Chairman, Dr. Kerrigan, and so much more.  

Don't miss the HH Symposium for Patients & Caregivers co-sponsored by BNI and Hope for HH. More information below.

WOW & THANK YOU to Wendi Tipps (see photo above with her son Landon) who organized the very successful M-o-o-ving Thru' The Mud fundraiser. To see photos and read Wendi's story, visit here. Interested in organizing your own fundraiser for Hope for HH, click here.

Special thanks to Roza Wu for developing the newly added Questions to ask your neurosurgeon about MRI-Guided Stereotactic Laser Ablation Surgery.
Hypothalamic Hamartoma Symposium
for Patients & Caregivers
hosted by
Barrow Neurological Institute & Hope for Hypothalamic Hamartomas 
Saturday, Nov. 10, 2012
7:00 AM - 3:30 PM MST
Sonntag Pavilion @ The Barrow Neurological Institute
Phoenix, AZ
Don't miss talks by leading HH experts on:
Robert Spetzler, MD - "Open" procedures
Ruth Bristol, MD - Endoscopic surgery
Jean Regis, MD - Gamma Knife Radiosurgery
Daniel Curry, MD - Laser Thermoablation
plus expert neurology, neuropsychology, & endocrinology
talks too!
There are 3 ways to attend this FREE symposium:

1. IN PERSON - advance registration required by Oct. 27, 2012- click here  and find the registration link at the bottom of the page.


2. VIA LIVE WEB BROADCAST- tune into this link or []. Webinar audience can submit questions during the event.


3. FOLLOWING THE EVENT - ON DEMAND - information will be available after the conference about how to access it on demand.


For a complete conference agenda, click here.

Kindly submit any questions for the experts in advance to: Use "conference questions" in the subject line.


For more information, contact Maggie Bobrowitz at 602-406-7585 or

If you don't get It - You don't get it!
the HH BLOG - that is


Marjorie Busby and her extraordinary bloggers are sharing very personal and heartfelt stories of life with HH. Sign up here to read them. Interested in sharing your point of view? Contact Marjorie to contribute to the blog.
Prefer to share your story in the Featured Family on the website, click here.


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

Happy Summer!
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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