Hope For Hypothamalic
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Once again hypothalamic hamartomas are getting national attention in the media.  The TV SHOW  "The Doctors"  will feature a story about Barrow neurosurgeon Dr. Peter Nakaji and two of his recent HH patients.  The segment will share the new laser surgery which is minimally-invasive and uses MRI-guided technology to destroy the HH tumors.  In Phoenix, the show airs on Channel 3 at 1 pm. Click here  link to check your TV listings for local air times. 

The Rare Epilepsy Network - which will include an HH patient registry - will launch SOON! 100% participation by all HH patients will be critical. 

Save the July 11-12 for an HH Family Conference. Let our extraordinary committee know what topics you want to hear expert advice on and more below.

Thanks to all our generous donors and especially the Tipps Family for another extraordinary FUNdraiser - $25000. Plans are underway for the next Mooving through the Mud in 2015. 

Lisa, Erica, Wendi, Julie, Emma & Ilene
HH Board & caregivers


The Rare Epilepsy Network - REN - will be launching a rare epilepsy registry to gather information from patients diagnosed with rare epilepies like HH THIS FALL! See more information here.  ALL HH families should SIGN UP so you will receive an email when the registry launches and can participate! 100% participation will be critical for all patients - kids and adults! If you have any questions, contact: ilenepennmiller@gmail.com.

Would you like to meet other HH families in person? 

Share hopes and challenges? 

Hear from HH experts on treatments and more? 

Get together with other families touched by HH for some fun? 


Save The Date for the HH Family Conference in Houston, TX July 11-12 2015.


The conference will include talks by top doctors on the latest in HH, plus time to socialize and have fun. Please share topics you would like to hear about. And also let us know if you are interested in attending so we can gauge meeting rooms, hotel rooms etc.  Please email Lisa Soeby  if you are interested or post your comments to the blog here. Thanks to ALL of those who are interested! HH Family Getaway Committee: Wendy Tipps, Mauri Jones, Kathy Jensen & Lisa Soeby


54 muddy shoes
164 pints of raw milk
600 mud-faced kids
668 ice cream sandwiches
10,000+ camera shutter clicks
$25,000 Dollars!

Having permission to get completely covered in good, clean mud... UDDERLY PRICELESS!
The Soebys & Busbys join the 
Tipps Family and get muddy.


The 3rd Annual M-o-o-ving Thru The Mud with Landon raised $25k! Thanks to Wendy Tipps and her incredible committee and community for their efforts.  See photos and read more here! Save the Date for Mooving 2015 - May 16, 2015.
Hope for HH Came in 3rd Place at the National Epilepsy Walk for Most Walkers!


 Genzyme Employees run the Boston Marathon in honor of HH!

Read here about Kathy who inspires us all to help others even when our own challenges loom large. From all the HH patients you have touched - THANK YOU KATHY! 

Looking for great holiday gifts?
Buy a Hope for HH T-Shirt for a loved one or yourself! Show your support for HH year round!


Get Stylin' in a Hope for HH Belt Buckle - interchangeable with other fashionable buckles. 40% of the proceeds go to Hope for HH. The fundraiser is being done in honor of Jason Calhoun. Buy here. 
And be sure to use GoodShop.com, GoodDining.com and GoodSearch.com for all of your shopping, dining and search needs. Each time you do, donations are made to Hope for HH!
 Provide information and support to HH patients, caregivers, and healthcare providers and  promote research toward early detection, improved treatments, living with HH, and cure.

Lisa Soeby, President

Ilene Miller, Vice President

Julie Robinson, Treasurer

Erica Webster, Secretary
Emma Kane, Research Dir.
Wendi Tipps, Fundraising
Hope For Hypothamalic Hamartomas  info@hopeforhh.org  www.hopeforhh.org 


Thanks to The Donn Family and Eli's dance teachers who organized a Quarter Auction that raised $900. The auction was a fun way to bid quarters on donated goods from local vendors like Origami Owl, Avon, Thirty One and many more. Angela, Jeff and Eli - we are so grateful. 


The Healy Family  

Special thanks to the Healys for sharing son Jack's story. These stories provide hope and help educate the community at large so no other HH diagnosis is missed! Read more here.


Harold Rekate, MD
HH MAB Chairman 
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 HH MAB Chair (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