Hope for HH was founded by a small group of dedicated parents who wanted to make sure other families touched by HH would benefit from the lessons many of us learned the hard way. There is no professional staff and the organization and website are maintained by volunteers. We welcome your financial support, as well as your time as a volunteer and your in-kind services.


Your time and In-Kind Support allow us to stretch our budget further. If you have a special talent and you would like to donate your time, please contact us at

Volunteer/In-Kind Support ideas:

  • Social media expertise
  • Database management experience
  • Marketing, graphic design
  • Printing

Raise Awareness

  • Participate in national events like the National Walk for Epilepsy
  • Share your story with Hope for HH and we will put it on our website for others to connect with and learn from you!
  • Post and share your stories and news on our Facebook Page 
  • You can share the Hope For HH flyer with friends and family, your local doctors and hospitals, specialists, and teachers and educators.


Your donations support our mission to provide support, educate and advance treatments and research. We couldn’t so it without you!


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Join Us

Take a few minutes to complete an information form about your connection to HH. We will add you to our electronic mailing list to receive updates concerning HH. Hope for HH is collecting information about HH patients so we can track new diagnoses (which we suspect are underreported) and better tailor our services to meet the needs of those newly diagnosed and living with this condition. 


Join Us