Thank you for all of your efforts to fill our logo with hope during November - Epilepsy Awareness Month! Friends of HH have baked, shared stories, joined HH, made donations and so much more! We are truly grateful. 

2016 has been an incredibly busy year for the foundation. We relaunched the website, organized the 3rd International Symposium on HH, launched Instagram and Twitter channels, founded a UK affiliate, walked & ran for HH around the world, and celebrated the discovery of an HH pathway and the launch of a clinical trial using focused ultrasound to ablate tumors. Read on to learn about all of the success of the past year.

There's still much to do! And we need to engage all 30,000 patients diagnosed with HH worldwide! In the year ahead, our Medical Advisory Board recommends we launch a comparative effectiveness study and a tissue biobank. And our Board wants to support even more newly diagnosed families as well as those living each day with HH with up-to-date information and resources. Hope for HH also wants to continue our work to ensure all HH surgical interventions are available internationally.

Today is #GivingTuesday!
Please commit to volunteer, donate 
and advocate for Hope. 


Wishing All Those Touched by HH Happy & Healthy Holidays, 
Hope for HH Board of Directors

disseminating information



We relaunched the HH website where you will find more up-to-date medically approved content in an easier to navigate fashion. Instagram and Twitter channels were also launched in 2016. HH has been a leader in the # Aimforzero,  #EpilepsyAwareness and #SUDEP campaigns

Are you connected to us on Facebook , Twitter , Instagram , You Tube , Blog , Newsletter ? Don't miss critical updates! Connect to us on ALL channels.

Special thanks to the dedicated HH Team of volunteers who answer calls, emails, Facebook posts, visit local hospitals and more to support newly diagnosed families. 

Visit hope for hh to catch up on HH stories in the news this past year. One common theme was for sure - many communities around the world are helping newly diagnosed HH patients raise funds to get the best treatments and hope for cure. 

gathering experts to roadmap HH
2  DAYS OF RESEARCH
9  COUNTRIES
11 SPONSORS
12 MULTI-SPECIALTY AREAS
+60 HH & EPILEPSY EXPERTS
= STRATEGIC ROADMAP FOR HYPOTHALAMIC HAMARTOMAS to improve diagnosis, treatment & management and find a CURE!

Hope for HH organized the 3rd International Symposium on Hypothalamic Hamartomas in collaboration with Hope for HH UK and University of College London. Hear an overview by Chair Dr. Helen Cross  HERE.   Also, watch the latest HH research presentations  HERE  (full and quick versions available)!

advocating for HH & epilepsy
100 friends of HH again walked for Hope for HH in DC, as well as virtually around the globe from Phoenix to London ! 

Save the Date for Saturday, March 25 for the 1 1th Annual Walk for Epilepsy in our nation's capital and our 10th year of walking for Hope  for HH! This year we hope even more friends of HH will walk in their hometowns! Can't join us in DC, look for t-shirts this spring and organize a walk in your community or invite a few friends to go for a walk and send your photos to Hope! 

Doin g a marathon, triathlon, biathlon - any athlon - do it for HH! Thanks to all who ran for HH in 2016. 


fun & fundraising for HH
M-O-O-VING THRU' THE MUD
5 YEARS + $100,000 Raised by Wendi Tipps and h er committee & community. Mark your calendars now for June 3, 2017 and get muddy!


educating professionals
Professional Outreach 
in the UK
Editorials Published 
in Journals
Outreach at
Conferences
Carrie Fulcher is an HH patient and advocate. Not only did she help found Hope for HH UK, she has led the charge in the UK to help educate health professionals about HH. And she is a point of contact for newly diagnosed patients as well!
HH is not alone in our struggle to accurate and timely diagnosis and treatment. Read an editorial on challenges faced by patients diagnosed with HH, NORSE and Aicardi Syndrome urging researchers and patients to join the REN.
Hope for HH is often invited to speak out at epilepsy conferences. HH leadership attended the Epilepsy Foundation's 2016 Annual Pipeline Conference to help educate professionals and the public about HH



Thanks Carrie, Hope for HH UK and your team of Ambassadors!
Listen to talks about partnerships and parents as advocates .

promoting research
2016 was a BIG year for research.  But HH research depends upon YOUR participation. 
  • Read about new genes discovered following a gene sequencing project on the SHH pathway HERE 
  • If you had HH surgery in Australia, please contact Dr. Freeman for a 10 year follow up study.
  • If you are an adult living with HH, see if you qualify for a new surgery using focused ultrasound HERE
  • Stay tuned for more information about a study on fmri to help isolate HH during preoperative planning; a tissue biobank, and a comparative effectiveness study. 
When you are asked to join the REN or another research study, 
please answer YES! 
It's the only way forward toward ultimate cure!

Make Hope for HH your charity of choice for #GivingTuesday. Give 
gene rously and ask your friends and relatives to as well. Donate Today!

Holiday shopping?  Register on amazon smile  or goodshop , select Hope for HH and we will receive a % of all purchases. 

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?