Volunteering your time allows Hope for Hypothalamic Hamartomas to expand its mission to help those individuals with HH, provide support to HH caregivers and increase awareness of this rare brain tumor and epilepsy disorder.  Are you inspired to help those living with HH?  To get the process started in becoming a Hope for HH volunteer, we invite you to complete the following Volunteer Inquiry Survey.  This survey will be used to gather a bit more info about you and your passion to help Hope for HH.

Volunteer opportunities include working on a committee or special initiative in one of the following areas:

  • Administration and Operations
  • Information and Outreach
  • Patient Support
  • Advocacy, Awareness and Public Policy
  • Fundraising and Special Events

Raise Awareness

Hope for Hypothalamic Hamartomas is the only organization in the world whose mission is to help and support those diagnosed with a hypothalamic hamartoma. Our goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH, as well as use our resources to help educate healthcare professions, school administrators and employers about this rare disease.  This is a huge goal that requires each HH individual and family member to join our awareness campaigns and drive awareness within their own circle of influence.

Throughout the year, Hope for HH hosts awareness campaigns for the following:

  • International Epilepsy Day (February)
  • Rare Disease Day (February)
  • Purple Day (March)
  • Brain Tumor Awareness Month (May)
  • International Hypothalamic Hamartoma Awareness Month (September)
  • International Hypothalamic Hamartoma Awareness Day (September 15)
  • SUDEP Action Day (October)
  • National Epilepsy Awareness Month (November)

Join our mission to raise awareness of hypothalamic hamartomas by one or more of the following:



Hope for Hypothalamic Hamartomas is a volunteer run nonprofit organization.  We rely on the generosity of our donors to provide individuals with HH and their families with the following:

  • 1:1 patient and caregiver support through phone and email
  • Patient and family support and education events
  • Surgical support bags provided to those going for surgical treatment
  • Virtual community events to connect individuals and families on this HH journey

In addition, we, as an organization drive the following:

  • Education of healthcare professionals
  • Internationals professional symposiums focused on hypothalamic hamartomas
  • Funding international HH specific research

To make an impact on the life of an individual today, please make a donation to Hope for HH.


Contact Registry

We maintain a contact registry of HH individuals and caregivers as a way to ensure those impacted with HH are informed about:

  • Opportunities to participate in research
  • Opportunities to contribute data
  • Discoveries about hypothalamic hamartomas that may impact care decisions
  • Hope for HH funded research grants
  • Hope for HH hosted patient and caregiver events
  • Fundraising initiatives and opportunities

Please register for the Contact Registry here.


Share Your Story

Sharing your hypothalamic hamartoma story reminds others that they are not alone in this journey of living with the rare disease. Telling your story validates what you have been through and provides encouragement and hope. There is a strength that comes with connecting with people who are experiencing the same issues (seizures, depression, anxiety, behavior, rages, memory, endocrine, school, work, life after surgery, etc) as you.

By sharing your story, you’re lending your voice to a community of shared experiences and amplifying the voices of the Hope For Hypothalamic Hamartomas community.

When you’re ready to share, we’ll be here to listen. You don’t have to be a professional writer, we are happy to help you write your story!

Please start the process today by completing the Share Your Story form.

Read stories shared by others on our Meet Other Families page.