wishing you happy holidays... hoping you will join us in 2016!

As 2015 winds down, your friends at Hope for Hypothalamic Hamartomas give thanks for our committed community of patients, family, friends, health care professionals, volunteers, and donors who support patients and families touched by hypothalamic hamartomas. 

As we reflect on this past year, we are in awe of what a small, determined community can accomplish

And a s we look ahead to 2016, stay tuned for a new website, more research, the 3rd HH International Symposium in London, and so much more. There are so many opportunities to become involved. We hope YOU will join us - with your time, talent and donations. Email us to get involved 

December 1st is #GivingTuesday. 
Please make Hope for HH #1 on your donation list.  

Happy Holidays & New Year!
Hope for HH Board of Directors

Your Generous Support helped....

HH Family Conference in Houston Provided Information & Community

For 4 days, HH families from around the world gathered together in Houston to obtain the most up-to-date medical information and a chance to connect in person with other HH families. Families traveled from around the world to participate in this event. For many, it was the first time they met another HH patient and caregiver. 

Hope for HH is grateful to our host Texas Children's Hospital and their tremendous staff of physicians, nurses, organizers, and administrators who truly went above and beyond to ensure the success of the event. 

Also thanks to all the doctors and speakers that traveled from out of state to join the panel of experts. If you missed the live conference, you can still listen to all of the presentations  here

We appreciate the financial support that was provided by our Friends at Cure Epilepsy, Epilepsy Foundation, LGS Foundation, Medtronic, The Blue Bird Circle, and The Houston Marriott.  Finally, sincere gratitude to Kathy Jensen, Traci Flan and Lisa Soeby and their army of volunteers who took care of every detail - large and small - to create this incredibly rewarding opportunity for our HH community.


There is NO stopping outstanding UK HH Ambassadors Carrie Fulcher & Sue Jackson who are traveling the UK to educate health care professionals about HH. Also, we are grateful for all of their tireless, creative fundraising efforts too. 

Stay tuned for more information about the 3rd International HH Professional Symposium in London fall 2016 spearheaded by HH Board of Director Emma Nott. 

And we are super proud of our Medical Advisory Board Chairman, Dr. Helen Cross, who was recognized in the Queen of England's Birthday Honors with the Officer of the Most Excellent Order of the British Empire (OBE) for her services to Children with Epilepsy. This is a HUGE HONOR!

Another SUCCESSFUL M-o-o-ving Thru' The Mud w it Landon 

Wendy Tipps and her incredible committee outdid themselves again with another extraordinary mudrun FUNraiser for Hope for HH. Thanks to the Committee and the Tipps family for continuing this tradition of fun, funds and hope!

Walking STRONG for HH in the Nation's Capitol
Nearly 100 strong again for the annual Walk for Epilepsy. Save Saturday, April 16th for the 10th Annual Walk!  Also special thanks to Board member Erica Webster whose creative designs show up everywhere including t-shirts, programs, logos, special appeals and more! As well as to Board member Julie Robinson who ensures the foundation's financial accountability.

Are YOU Are Signed Up for the RARE EPILEPSY
Hear HH Parent and RN Kathy Jensen Explain Why She Signed UP for the REN!

70 HH patients and caregivers have signed up for the Rare Epilepsy Network which is extraordinary. Our target enrollment is 115 - just 45 more sign ups to go. Lets show the other rare epilepsies how passionate HH families are about getting answers to this disease and be the FIRST to meet our target goal by 12/31/15. T-shirts or coffee cards ready to ship as soon as your sign up is complete. PLEASE join today. Need help? We are standing by to help you - contact us here.

New Research Into the Cause of HH
Researchers at Columbia University, University of Melbourne and the Barrow Neurological Institute recently collaborated to exome sequence (a technique to sequence all the protein-coding genes in a genome) DNA from hypothalamic hamartoma tissue and blood. Preliminary results on 30 cases show a somatic mutation (present in brain tissue but not in blood)   in over 40% of HH cases in a variety of genes that encode proteins involved in the hedgehog signalling pathway. 

Layman Translation: Something potentially went awry in the development of genes along this critical pathway that is required for proper embryonic development that led to the hypothalamic hamartoma. Significance of this Finding: The cause of hypothalamic hamartomas is 
unknown. This key new finding gives researchers critical information about potential causes of HH. It is hoped that such discoveries will lead researchers to answers about how to prevent, manage, and ultimately cure HH.

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.