Hope for Hypothalamic Hamartomas

09/06/2026

🩺 You shouldn't have to be the one teaching your doctor what HH Syndrome is.

Our Doctor FAQs were built to close that gap — a clear, clinical breakdown of HH Syndrome for physicians and specialists who may never have encountered it before. Print it, email it, or hand it over at your next appointment.

Sometimes the fastest way to get better care is to bring the information with you.

None of this exists without support — building and maintaining resources like this takes real funding, done by a handful of volunteers who have never given up on making sure your doctor has what they need to help you.

👉 Download here: https://www.hopeforhh.org/news-research-resources/resources/doctor-faqs/

💜 Donate → givebutter.com/2026-hhsyndrome-awareness or hopeforhh.org/donate

09/06/2026

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 just made history. 🎉

📄 In April 2026, International Consensus on the Evaluation and Management of Hypothalamic Hamartomas: Results from a Modified Delphi Survey was published in Neurology — one of the world's most prestigious neurology journals.

It 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 our co-founders Lisa Soeby and Erica Webster, this paper 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.

A special thank you to Dr. Nathan Cohen, who stepped forward after our 2025 Barcelona symposium to lead this paper as first author and carry it across the finish line. 🙏

Building international medical consensus doesn't happen overnight — it usually takes years of expert review, global input, and rigorous validation before a single guideline is agreed upon.

🕰️ For a rare disease like HH Syndrome, doing this can take years.

📍 2019 — Core questions proposed at our Washington DC symposium
📍 2022 — First Delphi round discussed in Calgary
📍 2025 — Final results presented in Barcelona
📍 2026 — Published in Neurology

And it is not the finish line. 🏁

This consensus is the essential foundation on which the first-ever comprehensive Clinical Recommendations for HH Syndrome must now be built — guidance that will reach every neurologist, every pediatrician, and every specialist who sees an HH Syndrome patient anywhere in the world.

Your donations this September fund that next chapter. 💜

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

We are closer than we have ever been. Help us finish it.

👉 Become a Team Member: https://givebutter.com/2026-hhsyndrome-awareness

09/06/2026

Will you join them?

Meet the team. 💜

This September, these people are giving it all they've got - fundraising for Hope for HH in honor of the people who inspire them every day.

🧡 Lisa - in honor of CJ, whose life reminds us why this science, and this mission, matter.

🧡 Laurel - in honor of Wyatt, fundraising because more research means better answers for every family navigating this rare diagnosis.

🧡 Angela - in honor of Eli, seizure and symptom-free for several years thanks to the doctors, research, and community Hope for HH has helped bring together.

🧡 Natalie - in honor of Maren, celebrating her daughter's 2-year seizure-free milestone on September 9th by giving back to the organization that gave her family so much knowledge and support.

🧡 Ezriel - an adult living with HH Syndrome herself, and one of our in-person attendees at this year's Patient and Family Conference. Ezriel is always showing up to help spread awareness for this community. (Her photo and story — coming soon!)

🧡 Penny - diagnosed with a Hypothalamic Hamartoma at just 3.5 years old, a diagnosis that opened the door to even more questions about her care. (Penny's photo and full story — coming soon!)

🧡 Michelle - fundraising in honor of her 7-year-old son, born with HH, who has endured multiple brain surgeries that controlled his seizures but brought new challenges. Michelle is fundraising for the research that leads to safer treatments and better outcomes for kids like him. (Her photo — coming soon!)

🧡 Erica & Perry - in memory of Grace, whose fight and joy for life continue to inspire this entire community.

Every one of these fundraising pages tells a story. Every dollar raised funds HH Syndrome research, education, and support for families living this journey.

But this is just the beginning. We know there are more stories in this community waiting to be told - more milestones, more memories, more reasons to give it all you've got.

And if you're an adult living with HH Syndrome, like Ezriel — your story matters here too. This mission is about your future as much as anyone's. We'd love for you to be part of this list.

If that's you, this is your invitation. Start a team. Share your story. Help us grow this list.

👉 Become a Team Member: https://givebutter.com/2026-hhsyndrome-awareness

Thank you, Lisa, Laurel, Angela, Natalie, Ezriel, Penny, Michelle, Erica, and Perry — for giving it all you've got. And to everyone who joins them next — we can't wait to meet you. 💜

09/05/2026

❓ Newly Diagnosed? — Patient Journey

Because many symptoms and comorbidities of Hypothalamic Hamartoma Syndrome can lead to complications and evolve over an individual's lifetime, the expertise of a multidisciplinary team is needed to effectively manage the care of patients with HH Syndrome. Knowing all you can about this rare and complex syndrome will help you advocate for the care you or your loved one needs.

A new diagnosis often feels like an answer — and it is. But it's rarely the last question you'll ask. Comorbidities can emerge years later. Care teams change. What worked at diagnosis may need to be revisited down the road. That's not a setback — it's simply what this syndrome asks of families, and this community never gives up asking the next question either.

🌐Website Resources include:

• Understand the Diagnosis
• Discover HH Treatment Options
• Learn about Treating other Comorbidities
• Identify your HH Healthcare Team
• Get Support from the community

ℹ️ Our website provides resources for this step of the HH Journey here: https://www.hopeforhh.org/what-is-hh/patient-journey/newly-diagnosed/

💜 This September marks 17 years of Hope for HH — Giving Hope. Getting Answers. Never Giving Up. Please consider donating today to help fund research and patient programs.

• Give through our GiveButter Fundraiser — https://givebutter.com/2026-hhsyndrome-awareness

• Give through our website — https://www.hopeforhh.org/donate/

09/05/2026

❓ Why is HH Syndrome so hard to diagnose?

For many families and adults living with HH Syndrome, the diagnosis doesn't come quickly — or easily.

HH Syndrome is rare enough that most doctors, even experienced pediatricians and neurologists, will go their entire careers without ever seeing a case. That rarity is exactly what makes the diagnostic path so difficult — whether the person seeking answers is a young child or an adult who has lived with unexplained symptoms for years.

A few reasons the diagnosis is so often delayed:

🧩 The symptoms don't obviously point to the same cause. Gelastic seizures, precocious puberty, rage behaviors, developmental regression — on their own, each can look like a separate, unrelated issue until someone connects them back to one underlying source.

🍼 In infants, early signs mimic common conditions. Gelastic seizures are frequently mistaken for colic, reflux, or normal fussiness. In toddlers and young children, they're sometimes written off as tics or quirky behavior.

🧑 In teens and adults, symptoms are often misattributed too. Rage episodes, mood changes, weight gain, or subtle seizure activity can be chalked up to behavioral issues, mental health conditions, or unrelated hormonal problems — especially in adults who were never diagnosed in childhood.

📚 Most doctors have never seen a case. With HH Syndrome this rare, many physicians have only read about it in a textbook — if at all.

🖼️ It takes the right imaging, read the right way. HH lesions can be missed on standard scans unless imaging follows a protocol built specifically to detect them. That's part of why Hope for HH publishes an MRI protocol for physicians and radiologists to use:
🔗https://www.hopeforhh.org/wp-content/uploads/2021/05/HopeForHH_MRI-Protocol_v3_2021_final.pdf

🔄 Comorbidities are treated separately, not connected. Someone might see an endocrinologist for early puberty or hormone issues, a psychiatrist for rage or mood symptoms, and a neurologist for seizures — without anyone identifying HH Syndrome as the single root cause tying it all together.

👉The result: many children and adults spend months, sometimes years or decades, moving from specialist to specialist before they get an answer — often only after searching their symptoms online and finding a name for what they've been living with.

This is exactly why education matters. Every post like this one puts "hypothalamic hamartoma" in front of a few more parents, patients, teachers, and doctors — so the next person doesn't have to wait as long.

📹 Learn more about what to look for and how HH Syndrome is diagnosed:
🔗 hopeforhh.org/what-is-hh/understanding-hh

💜 Please consider donating today to help fund research and patient programs.

GiveButter: https://givebutter.com/2026-hhsyndrome-awareness
Website: hopeforhh.org/donate

09/05/2026

Hollie's quote, "You get 3 choices in life: give up, give in, or give it all you've got", inspired this series. Today it's Laura's turn, Molly's mom, now living in South Carolina.

When Molly was diagnosed with HH Syndrome in February 2002, Laura walked into every appointment with a stroller in one hand and a folder of MRI films and her own "executive summary" in the other. After Molly's successful surgery, life went on raising Molly and her sister Emily, and more than 20 years of teaching, and later a PhD in business. Laura returned to Hope for HH after retiring, a path that HH Syndrome and Molly ended up shaping in ways she never expected.

"We did experience the gift of community when Molly had her surgery in September 2003 at Barrow and the Soeby family shared meals with us, sat with us in the waiting room, and supported us during our stay in Phoenix. Full circle to the conference this past July, seeing the Soeby family in person... 23 years later, because of this organization."

Molly is thriving. Laura could have closed that chapter. Instead, she came back — not as a daily caregiver, but as a researcher, an advocate, and a "pushy parent" who wants every family to know they're doing a great job just getting to a diagnosis.

Read Laura's full story on our blog. https://www.hopeforhh.org/laura-give-it-all-youve-got/

💛Inspired by Laura's story? Join the fight for every HH Syndrome family.
🔗Donate at hopeforhh.org or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.

09/05/2026

09/04/2026

Join the free online webinar "Understanding Acquired Hypothalamic Obesity: Disease Education and Treatment Options"

Join the free online webinar "Understanding Acquired Hypothalamic Obesity: Disease Education and Treatment Options" featuring Dr. Katie Queen, as well as David, a patient living with acquired HO.

Program for patients and families in the U.S.

To register for this FREE webinar, please scan the QR code or visit: https://bit.ly/3ScZ5j

For more information on Acquired HO: https://ho.differentobesity.com/

09/04/2026

❌MYTH: An HH only causes seizures.

✅FACT: Seizures are often just the beginning of this complex syndrome.

As we talked about in an earlier post, the definition of the HH (the lesion) and HH Syndrome (everything that can follow) are different. Because the hypothalamus is the brain's master control center, that one small lesion/tumor can affect cognition, behavior, hormones, puberty, weight, and emotional regulation in children and adults alike, sometimes changing across a lifetime.

A person can stop having seizures as a child or an adult and still be fighting rage episodes, hormone imbalances, or hypothalamic obesity years or even decades later. Families live this every day, at every age. Doctors don't always see it coming.

This is why "seizure control" is never the finish line for our Hope for HH community and why research into the whole syndrome, across the whole lifespan, matters so much.

💜 Know someone who thinks an HH just means seizures? Share this.