Hope for Hypothalamic Hamartomas

10/16/2026

🎗️ Some partnerships are about more than a logo. They're about a shared mission, and some stand the test of time.

💜 In 2009, Mike and Mariann Stanton lost their 4-year-old son, Danny, to SUDEP. They had never heard the word. Since then, The Danny Did Foundation has worked so that no family is caught unaware, raising awareness of SUDEP and helping families access seizure detection devices.

🎤 This year, Danny Did's Executive Director, Mary Duffy, joined our 2026 Patient & Family Conference to present on SUDEP and seizure detection devices.

🤝 For several years, Hope for HH has funded grants through The Danny Did Foundation to help our community access seizure detection devices. Our current grant provides devices for up to four individuals with HH Syndrome. Currently available devices can't detect gelastic or dacrystic seizures, but these devices can be extremely helpful for other types of seizures which many with HH Syndrome experience. Talk with your care team about whether a device is right for your family.

📝 To apply, complete The Danny Did Foundation's grant application and let them know about your HH Syndrome diagnosis: https://www.dannydid.org/grant-application/

🙏 Danny Did Foundation. Hope for HH. Closing the gaps in SUDEP awareness. Together.

🙏 With gratitude to SUDEP Action (https://sudep.org/) for their work and their voice.

10/15/2026

🧠💜 HYPOTHALAMIC HAMARTOMAS: MORE THAN JUST SEIZURES

HH tumors can disrupt the body’s hormonal control center, alongside seizures. The hypothalamus and pituitary gland work together to regulate many of the body’s most important functions. When an HH develops, it can interfere with this delicate system.

💜 What does the pituitary gland do?
The pituitary gland is often called the "master" gland because it releases hormones that help control other glands and essential body functions, including:
🧠 Growth and development — regulating growth hormone and physical development.
📈 Puberty — controlling the hormonal signals that trigger puberty. Some children with HH experience precocious puberty, meaning puberty begins earlier than expected.
💧 Water balance — the hypothalamus and posterior pituitary work together to regulate water balance through antidiuretic hormone (ADH). Disruption can cause AVP-D (previously, DI), a condition that affects the body’s ability to conserve water.
⚡ Stress response — the hypothalamus and pituitary help regulate cortisol production through signals to the adrenal glands. Disruption of this pathway can contribute to adrenal insufficiency.
🦋 Thyroid function — pituitary hormones help regulate the thyroid gland, which influences metabolism, energy, and growth.
⚖️ Appetite and weight regulation — the hypothalamus plays a major role in hunger, fullness, and energy balance. Damage or dysfunction can contribute to hypothalamic obesity, which is much more complex than simply eating too much.

💜 Why does this matter?
HH Syndrome is not just a seizure disorder. Patients may experience a range of neurological, hormonal, metabolic, behavioral, and developmental challenges. Not everyone with HH will develop all of these complications.
Raising awareness means recognizing the WHOLE patient, not just the seizures. Families and caregivers deserve access to knowledgeable specialists, appropriate hormonal monitoring, and comprehensive care.

Learn more: https://www.hopeforhh.org/what-is-hh/understanding-hh/the-hypothalamus/

💜 Help us spread awareness of HH Syndrome and the many ways it can affect a patient's life.

10/13/2026

Gentle note: this post talks about loss in our community.

Why does an HH Syndrome organization talk about SUDEP?

💜 Because SUDEP has touched our own community. We have lost several members of our HH Syndrome family to SUDEP, including Grace Webster, the daughter of Hope for HH co-founder Erica Webster. Grace, and each person we have lost, is a big part of why we keep this conversation going.

🧠 Gelastic (laughing) seizures caused by the HH lesion can be hard to control with medication, and over time some people also develop generalized tonic-clonic seizures. Other factors linked to SUDEP are common in HH Syndrome too, including seizures during sleep and epilepsy that begins young and continues for many years.

⚡ Frequent generalized tonic-clonic seizures are the biggest risk factor for SUDEP, and missed medication doses can lead to breakthrough seizures. Other possible factors include male s*x, drug-resistant epilepsy, and certain genetic conditions.

🔬 Researchers are still learning exactly why SUDEP happens, but it may involve changes in breathing, heart rhythm, and the body's automatic controls during or after a seizure. Knowing the risks helps every family have informed conversations with their care team.

💬 Did your care team talk with you about SUDEP? Share what helped you start that conversation.

🔗 Have specific questions about SUDEP? Visit SUDEP Action (https://sudep.org/) and The Danny Did Foundation (https://www.dannydid.org/).

SOURCE: CURE Epilepsy (https://www.cureepilepsy.org/)

🙏 With gratitude to SUDEP Action (https://sudep.org/) for their work and their voice.

10/12/2026

Save the Date: Monday, October 19, 2026 - 6pm Central

Rhythm Pharmaceuticals is hosting a free webinar titled "Understanding Acquired Hypothalamic Obesity: Disease Education and Treatment Options"

Featuring:
- Dr. Jose David Gamez-Godoy, Endocrinology, DHR Health
- Bonnie and Ian, Caregiver and patient living with acquired HO

Register here: https://us06web.zoom.us/webinar/register/WN_qRlhxI0LQRKIXwsoIcMvyg #/registration

10/11/2026

World Mental Health Day is observed annually on October 10 to raise awareness for and reduce the stigma of mental health care. The theme for 2026 is “Lived Experiences Heard: Real Voices, Real Change,” which focuses on listening directly to individuals who live with mental health conditions. If you feel comfortable, feel free to share your experience below, as a patient, caregiver, or provider. We are all in this together, and other members of our community are here to give support if needed!

Whether the HH patient is a minor or an adult, being a patient with chronic physical illness, undergoing medical treatments, or navigating the healthcare system can take a heavy emotional toll. Over time, this can lead to secondary anxiety, depression, or burnout. Addressing mental health is just as important as treating physical symptoms.

Your personal experience as a patient matters - sharing your experience can help get you appropriate, compassionate treatment. It can also help others understand that they aren't alone in this situation, and create connections who can support each other when things feel difficult.

Where to find support:

 - Talk to Your Care Team: Let your primary care doctor, specialist, or nurse know if you are feeling overwhelmed, anxious, or depressed—mental health care is a standard part of medical treatment.

 - Crisis & Support Lines: If you or a loved one need immediate, confidential support, reach out to your local crisis support line:

💜 In the USA and Canada: Emergency = 911, Su***de and Crisis Lifeline = 988
💜 If you are in another country, please check this list for your local support line: https://blog.opencounseling.com/suicide-hotlines/

No one fights this battle alone. Never be afraid to reach out for help.



10/09/2026

Great opportunity in Texas to learn more about Hypothalamic Obesity from our friends at Raymond A. Wood Foundation and Rhythm Pharmaceuticals.

Rhythm Pharmaceuticals was one of our sponsors and Dr. Mohamadi presented on the topic at our 2026 Patient and Family Conference.

Registration is now open for HOPE Austin, a free half-day gathering for individuals and families affected by hypothalamic obesity.

What to expect:
• Presentation on hypothalamic obesity
• Q&A with Dr. Horne, Texas Children’s Hospital
• Small-group roundtable discussions
• Lunch and time to connect

When: November 8, 2026, 10:00 AM - 2:00 PM
Where: Courtyard Marriott Downtown Austin

Registration is FREE, but space is limited. https://zurl.co/DzXwf

10/09/2026

💜 Not everyone diagnosed with epilepsy is told about SUDEP. Many families first hear the word long after diagnosis, or only after a loss. Knowing the basics, and the steps that can lower risk, helps change that.

👉 Swipe through for the basics. The most important takeaway: some risk factors can't be changed, but many can. Working toward fewer seizures, taking medicine as prescribed, and talking openly with our doctors are steps every family can take.

🔗 Have specific questions about SUDEP? SUDEP Action (https://sudep.org/) and The Danny Did Foundation (https://www.dannydid.org/) are trusted places to learn more.

Source: American Academy of Neurology and American Epilepsy Society SUDEP guideline (2017).

10/07/2026

💜 SUDEP Action Day is October 21, and this year we don't want this important conversation to happen on just one day.

🧠 SUDEP stands for Sudden Unexpected Death in Epilepsy. Not everyone diagnosed with epilepsy is told about SUDEP, what raises the risk, or the steps that can lower it. We want to help change that.

📅 Throughout October, we'll share what SUDEP is, why it matters for HH Syndrome families, and practical steps that can help reduce risk, leading up to SUDEP Action Day and continuing after it.

💡 This series isn't about fear. It's about empowering our HH Syndrome community with knowledge, so every family understands SUDEP, knows the steps that can lower risk, and feels ready to talk with their care team.

🤝 Raising awareness, increasing education, and starting conversations are all steps toward ending SUDEP. Follow along, save what helps, and reach out to us anytime.

🙏 With gratitude to SUDEP Action (https://sudep.org/) for their work and their voice.

10/06/2026

💛 THANK YOU! 💛

This September, we set a goal of $30,000 and asked you to Give It All You've Got. You blew right past it. 🙌

Together, our community raised $39,698.70+ during 2026 International HH Syndrome Awareness Month! 🎉

There are so many ways to give, and you showed up in every one of them. Team Members rallied friends and family. A community member turned her art into a fundraiser. Gifts came in by check, online, through Facebook, and from our Bonfire store. Foundations, donor-advised funds, stock gifts, and employer matches carried us even further. ➡️ Swipe through to see how it all came together.

Your generosity has already helped move HH Syndrome research forward, and this year's support sets the stage for what comes next: 🔬 new research, 📚 more resources for families, and 💡 more answers for everyone living with HH Syndrome.

We can't do this alone, and thanks to you, we don't have to. This is an investment in the future, and we are so excited to see where it takes us. 💛

Thank you for giving it all you've got.

Support for HH Syndrome research continues year-round 👉 hopeforhh.org/donate

10/03/2026

Fourteen voices. One community. One September.

This is Give It All You've Got — our series for the 17th International HH Syndrome Awareness Month. Thank you to every person who shared their story, and to everyone who read, shared, and gave.

The series may be over, but the fight isn't. 💜

👉 Read every story at https://www.hopeforhh.org/tag/give-it-all-youve-got/ — link in bio.