Kudos to Hope for HH Medical Advisory Board members Drs. Alexis  Arzimanoglou, Helen Cross and Jack Kerrigan on the publication of "Pediatric Epilepsy Surgery" book with whole chapters dedicated to HH. We are so grateful for your dedication to HH and epilepsy. Publisher John Libbey is offering 30% off the list price of the book for HH families. To order yours contact, info@hopeforhh.org . 

Extra praise to Kathy Jensen & Julie Robinson for all their work into making sur e all HH surgery patients in TX & AZ receive a care package with creature comforts from HH. 

Please mark your calendars now for the HH Washington DC Family forum, Dec. 3-4. More info to follow soon.

Keep reading how to raise HH awareness - with shirts, walks and stories! And learn more about several HH and epilepsy studies and clinical trials. 

Hope for HH Board of Directors

raise hh awareness - 3 ways

BUY an HH SHIRT & ASK your friends to as well ... Only 3 days remain to meet our goal of 100 Hope for HH t-shirts sold. So many cool styles (ts, tanks, hoodies) and sizes to choose from. Buy yours today  
HERE. 
And tell your family and friends to buy theirs too! 

Then walk for HH & epilepsy... in Washington DC or in your home town on March 25th. 


And share your HH journey on Rare Disease Day, Feb. 28...  There are only 30,000 people worldwide living with HH!  To mark Rare Disease day, upload your photo or video with your personal HH journey to Hope's Facebook page and your own. 

join hh & epilepsy studies!


HH Patients ages 18-22 - A new Focused Ultrasound Clinical Trial at Miami Children's Research Institute. More info here. 

HH Adults - participate in the largest Quality of Life study just for adults living with rare disorders like HH here.

The Children's Hospital of Philadelphia (CHOP) in collaboration with the Rare Epilepsy Network is conducting a study about sleep to understand how sleep health relates to chronic conditions like autism and epilepsy. Just 10-15 minutes to participate. More info on the sleep study here. Not part of the REN, join here!

HH Adults - hear more information about a Focused Ultrasound trial for HH recruiting now at UVA. Contact Stacy Thompson to learn more. And listen at left to learn all about this new technology.


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.

DO YOU GET IT ALL?