Usually we reserve our year-end November electronic newsletter for an overview of all we have accomplished. However, our volunteer Board is working extra hard so we wanted to share a Q1 update with our entire HH patient, caregiver, researcher and donor community.   So please read on to learn more about:
  • promising research grants awarded
  • upcoming family events 
  • the launch of surgical care bags for families at BNI & TX Children
  • our first Facebook Live event - watch it here!
  • save the date for - Moovin' Thru the Mud with Landon - June3
Also like to extend a special thanks to the unsung behind the scenes heroes like Lawrence Prosen and his terrific team of attorneys at  Kilpatrick Townsend & Stockton LLP  for their pro bono legal support for HH. You are a critical part of the HH volunteer network and we are grateful. 

Wishing you a happy April, 
Hope for HH Board of Directors

Hope for HH awards 2 key research grants!  
Hope for HH has long supported information, support, and advocacy. With the generous support of our donors and fundraisers, we  are pleased to have recently awarded two critical grants! Thanks to The Allalouf Family, the M-o-oving Thru the Mud for Landon fundraiser and all of our generous donors who made these grants possible. 


A grant awarded to Dr. Varina Boerwinkle of Baylor College of Medicine/Texas Children's Hospital (and her team) to complete analysis and pursue publication that will demonstrate whether rs-fMRI reliably identifies the areas of the brain that are appropriate targets for laser ablation; the correlation with the child's seizure frequency 6 to 12 months later; as well as understanding whole brain network relationships in HH patients.

This grant was generously funded in collaboration with Allalouf Family and the Mo-o-ving Thru the Mud for Landon fundraiser. Thanks also to our affiliate Hope for HH UK for administrative support. 


The search for new treatments for the seizures and cognitive deficits resulting from hypothalamic hamartomas has been hindered by a complete lack of animal models of this condition. The research proposed here hopes to facilitate therapy discovery by generating a new and innovative animal model of hypothalamic hamartoma. Hope for HH is pleased to have funded a research grant to Drs. Karen Wilcox and Peter West at the Anticonvulsant Drug Development Program at University of Utah to "generate a novel rat model of HH." 



Register TODAY for the DC Family Forum
Hope for HH is planning our 2017 Family Forum in Washington, DC December 2-3. This year's Forum will kick off with a treatment and research update, but will focus on the many challenges managing
HH. Our format will include presentations and interactive dialogues on cognition, behavior, endocrine, transitions, alternative therapies, family dynam ics and more. 

Hope has secured a great price on suites at a Hotel  convenient  to all the sites so you can come for the Forum plus a day before or after if you want to sightsee as well. However, hotels fill up fast in December in DC. We urge you complete your registration and book your rooms NOW. Click below! 



Patients Awaiting Surgery Get Extra Care
HH Patients and their families awaiting surgery at Barrows Neurological Institute/Phoenix Children's Hospital and Texas Children's Hospital will be greeted with a special surgical care package from Hope filled with comforts for patients and caregivers. Thanks to our friends at M-O-O-Ving Thru the Mud for making this program possible. Special thanks also to Osborne books and others who have donated goods to this cause. 

walkers for HOPE around the world!  

We were thrilled to see Hope walkers from Miami to Washington DC to Colorado and Arizona. Thank you to patients Staci, Reid, CJ, Colby, Eli, Colin & Carrie for representing our patient community. Thrilled to be joined by research grantee Sam Torrisi in DC. And shout outs to Carrie in the UK, our MAB member Dr. Shirozu in Japan, Caring for Colin in Canada, and Mark Miller and his crew in Morocco. Post a pic to FB anytime you #walkforHH!

Hope for Hypothalamic Hamartomas 

Provides information and support to HH patients, caregivers, and healthcare providers and  promotes research toward early detection, improved treatments, living with HH, and cure.

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