Fall is in high gear as is Hope for HH. We are busy preparing for our:
  • first 5K in Maryland on 9/24 (near Washington DC) (THIS SUNDAY!)
  • booster campaign (COMING SOON)
  • the DC Family Forum on 12/2-3
As you know, we are a small group of dedicated volunteers and boy could we use YOUR help. Interested in getting involved? See some discrete projects below. 

And a few THANK YOUS to our extraordinary doctors:

  • Dr. Regis secured FREE access to the HH Epilepsia Supplement. Read original text HERE. Or stay tuned for our lay summaries posted to the blog.
  • Thanks Dr. Kerrigan for helping to update HH content on NORD.
  • Did you catch info about Cure's Epi watch study? Read about the Busby's experience using a similar watch as well. 

Happy fall to all, 
Hope for HH Board of Directors


Calling all runners and walkers in and around METRO DC. OrthoBethesda is launching their inaugural 5K with all proceeds going to Hope for HH. Hope you will join us and help spread the word about a great event for a great cause. The event is on Sunday, Sept. 24 at 8 AM. For more information or to register - click below!

Register TODAY for the DC Family Forum

The DC FAMILY FORUM includes a deep dive on HH and cognition, behavior, memory, transitions, endocrine, family dynamics, and alternative therapies. Get to know our experts here.

Do you live on the East Coast? Get to this event by plane into Reagan National Airport, by train to Union Station, by metro/MARC or by car! The conference is at the hotel where we have secured rooms to maximize time with other HH families and our experts. The event is also downtown with easy access to all of the best DC sights!

And if you need Financial Assistance, click here to learn more. We urge you complete your forum registration and book your rooms NOW below.

Help us Honor Dr. Rekate

Thank you  rasterized version.
Dr Rekate, gifted pediatric neurosurgeon and one of the pioneers of HH surgery, is retiring at the end of 2017. If you would like to wish him well and thank him for his years of dedicated service to the HH Community and Hope for HH, please send your cards/letters to Lisa Soeby by October 31st. She will be presenting them to him personally at his retirement party in Phoenix, AZ in November. Address them as follows:

Lisa Soeby
Attn Dr Rekate

Become a Volunteer

Got a little time and a lot of skills? We could use your help! Short and long term projects available. Currently we are recruiting for help with:
  • graphic design to create the DC Family Forum program
  • fundraising
Like to join our team of volunteers? Contact: info@hopeforhh.org
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.