Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded in 2009 by parents of children with Hypothalamic Hamartoma Syndrome (HH).

Seventeen years ago, a group of families came together around a simple but powerful belief: that no one should ever face Hypothalamic Hamartoma Syndrome alone.

That belief built Hope for HH. It funded research. It convened the world's leading HH Syndrome experts — six international symposia across three continents. And in April 2026, it produced something that has never existed before in the history of this syndrome.

International Consensus on the Evaluation and Management of Hypothalamic Hamartomas: Results from a Modified Delphi Survey — published in Neurology, one of the world's most prestigious neurology journals — is the first-ever internationally validated consensus on how HH Syndrome should be evaluated and managed. Co-authored by Hope for HH's own Medical Advisory Board alongside co-founders Lisa Soeby and Erica Webster, it establishes, for the first time, a globally agreed-upon framework covering not just seizures, but the full spectrum of comorbidities that patients and families have been fighting to have recognized for decades.

But this is the beginning, not the end.

The Delphi consensus is the essential foundation on which the first-ever comprehensive Clinical Recommendations for HH Syndrome must now be built. Translating this consensus into actionable clinical guidance — guidance that will reach every neurologist, every pediatrician, and every specialist who sees an HH Syndrome patient anywhere in the world — requires continued work, continued collaboration, and continued resources. The researchers and clinicians who made this paper possible are committed to completing that milestone. But they cannot do it without the community that made it possible in the first place.

Your donations this September fund the next chapter. We are closer than we have ever been. And we need your help to finish it.

Read the paper (open access): https://pmc.ncbi.nlm.nih.gov/articles/PMC13031823/

This past July, that same community came together in Chapel Hill, North Carolina for our 2026 Patient and Family Conference — hosted by the University of North Carolina at Chapel Hill. Patients, families, caregivers, clinicians, and advocates gathered to learn, connect, and remind each other that no one faces this alone. For many, it was the first time they had ever met someone who truly understood their journey.

This September, we are giving it everything we've got. Again.

Our goal this year is $30,000.

Every dollar funds HH Syndrome research, patient education, and the family support programs that make events like our Patient and Family Conference possible. Hope for HH is 100% volunteer-run. No salaries. No overhead. Every cent goes directly to the mission.

Why it matters.

Hypothalamic Hamartoma Syndrome is a rare brain tumor with complex comorbidities — epilepsy, cognitive decline, hypothalamic obesity, hormonal dysfunction, rage behaviors, anxiety, and more. It affects approximately 1 in 200,000 people worldwide. Many go undiagnosed for years. Many are told their symptoms have nothing to do with their tumor. Many face this journey without ever meeting another family who understands.

Hope for HH exists to change that. For the family searching online at 2am after a diagnosis they've never heard of. For the adult who spent decades being told the wrong story about themselves. For the child who deserves a doctor who knows exactly how to help.

Your voice is driving the science.

Hope for HH doesn't just fund research. We initiate it — because the patients and families in this community have always known things about HH Syndrome that the clinical literature hadn't yet caught up to.

The HH Comorbidity Survey was designed by Hope for HH co-founders Erica Webster and Lisa Soeby, reviewed by our Medical Advisory Board, translated into multiple languages, and conducted with patients and families across our global community. Its results were presented at the 2019 International HH Syndrome Symposium in Washington DC — the same meeting where Hope for HH launched the initiative to develop the first-ever clinical recommendations for HH Syndrome.

The survey was built on a conviction that has guided everything we do: that HH Syndrome is not simply a tumor that causes seizures and precocious puberty. It is a complex, lifelong syndrome whose full impact — cognitive, psychiatric, behavioral, endocrine, and beyond — has been systematically absent from research and clinical practice. And that adults living with HH Syndrome, who carry this diagnosis across their entire lives, have been almost entirely invisible in the medical literature.

A paper documenting the survey's findings is currently under review for publication — the next step in making the patient and family voice a permanent part of the clinical record.

That 2019 meeting also launched the Delphi process that resulted in the first-ever international consensus on HH Syndrome evaluation and management, published in Neurology in March 2026. The community data we gathered helped make that possible.

The Hypothalamic Rage Study is our current active research initiative — developed by Erica Webster and Laurel Gallant, with Dr. Madison Berl and Dr. Varina Boerwinkle as Medical Advisory Board sponsors. It is gathering patient and caregiver data on rage and aggression as a comorbidity of HH Syndrome — one of the most devastating and most overlooked aspects of this disease — in English, German, and Italian, with expansion to additional languages underway.

The data being collected is already shaping clinical awareness and future treatment approaches. And it exists because members of this community chose to participate. If you or a loved one is affected by hypothalamic rages, your voice is needed. Email ewebster@hopeforhh.org for more information.

This is what your donation funds. Not just research about HH Syndrome. Research driven by the people living with it.

This year's campaign is inspired by Hollie — an HH Syndrome warrior from Ireland — whose words capture everything this community stands for:

You get three choices in life: give up, give in, or give it all you've got.

That is what this community does. Every single day. And your donation is part of it.

Hope for HH Mission:

Hope for HH drives education, support, and research for Hypothalamic Hamartoma Syndrome — focusing on early detection, improved treatments, and managing HH Syndrome as the complex medical condition it is, with the goal of one day finding a cure. We are the only organization in the world dedicated exclusively to serving the HH Syndrome community across education, research, and support.

Learn more at hopeforhh.org

2026 International Hypothalamic Hamartoma Syndrome Awareness

Giving Hope. Getting Answers. NEVER GIVING UP.

Team Members