Hope for Hypothalamic Hamartomas

Hope for Hypothalamic Hamartomas Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Hope for Hypothalamic Hamartomas, Nonprofit Organization, 141 N Palmetto Avenue Box 941, Eagle, ID.

Hope for Hypothalamic Hamartomas, (Hope for HH) a 501c3 non profit organization that provides information and support to newly diagnosed patients and their caregivers and promotes research toward the prevention, treatment and cure of this condition.

Research shaped by our community.πŸ”¬ Two groundbreaking researchers. The results our community has been waiting for.Dr. Ma...
06/03/2026

Research shaped by our community.

πŸ”¬ Two groundbreaking researchers. The results our community has been waiting for.

Dr. Madison Berl will be presenting her analysis of Hope for HH's HH Syndrome Community Survey results β€” shaped entirely by the voices of patients and families just like yours. What did the community say? What does it mean for care?

ο»Ώο»ΏDr. Varina Boerwinkle will be presenting her analysis of Hope for HH's HH Rages community data β€” bringing the latest insights into one of the most challenging and least understood aspects of HH Syndrome. What are hypothalamic rages really? What is the data telling us? And what does that mean for patients and families navigating them every day?
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πŸ“‹ Haven't taken the HH Rages Community Survey yet? There's still time β€” and it's available in multiple languages. Every response helps shape the research Dr. Boerwinkle will be presenting. Your voice belongs in this data. Email [email protected] to receive your link.

ο»ΏThis is the kind of session that reminds you why this conference exists β€” because your lived experience drives the science.

ο»ΏπŸŽ₯ Can't watch live? Registered attendees get first access to the recorded sessions
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πŸ“… Virtual registration closes June 30
πŸ”— Register: https://2026HopePatientFamilyConference.eventbrite.comο»Ώ
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πŸŽ—οΈ Some partnerships are about more than a logo β€” they're about a shared mission. And some partnerships stand the test o...
06/02/2026

πŸŽ—οΈ Some partnerships are about more than a logo β€” they're about a shared mission. And some partnerships stand the test of time.

We are honored to recognize the Danny Did Foundation as a Bronze Sponsor of the 2026 Hope for HH Patient & Family Conference β€” and even more honored to call the Danny Did Foundation a longstanding partner in caring for this community.

For several years, Hope for HH has provided financial grants to help our community members receive seizure detection devices through the Danny Did Foundation.

Danny Did Foundation's Executive Director, Mary Duffy, will be joining us at the conference to present on SUDEP and seizure detection devices, one of the most important and often under-discussed topics in the HH Syndrome community. This isn't just a sponsorship. It's a partnership built on a shared conviction that every family deserves honest information and the tools to stay safe.

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

πŸ“… Virtual registration closes June 30

πŸ”— Register: https://2026HopePatientFamilyConference.eventbrite.com

18 Experts. 2 Days. 1 Community.πŸ’œ "Families who come to our conferences often arrive feeling isolated and overwhelmed. W...
05/29/2026

18 Experts. 2 Days. 1 Community.

πŸ’œ "Families who come to our conferences often arrive feeling isolated and overwhelmed. What they find β€” expert knowledge, peer connection, and genuine community β€” can be life-changing."

This year's conference isn't just medical sessions. It's HH Syndrome survivors sharing their journeys. Parents who've been in your shoes. Adults living with HH Syndrome who finally found their people.

Our panelists Carrie Fulcher, CJ Soeby, Hollie Massey, Brittany Matney, Ellie Fulcher, Emily Egeln, Alex Heger, and so many more voices that will remind you: you are not alone.

Whether you're newly diagnosed or years into this journey, there's a seat at this table for you. Virtually, from anywhere in the world.

πŸŽ₯ Your registration is your all-access pass β€” including early access to the recordings approximately two weeks after the event, wherever you are in the world.

πŸ“… Virtual registration closes June 30

πŸ”— Register: https://2026HopePatientFamilyConference.eventbrite.com

We close Brain Tumor Awareness Month with a HUGE thank you to our followers for the support and trust you show us every ...
05/29/2026

We close Brain Tumor Awareness Month with a HUGE thank you to our followers for the support and trust you show us every day.

The HH Syndrome patient often has a long journey ahead of them. As you have now seen, the brain is a complex place. It can take patience and perseverance to get the answers and treatment that apply to your particular situation.

Please be sure to reach out to Hope for HH at any time. Support for your patient, family, and community are essential for this journey.

Join our Facebook support community: https://www.facebook.com/share/g/1EazhSNbj9/

If you haven't already, take a look through our support documents - good for bringing to appointments or sharing with people needing information: https://www.hopeforhh.org/news-research-resources/resources/educational-brochures/

No one fights this alone! Hope for HH is fighting right alongside you.
Please see our Ways to Give webpage for ways we can use your help: https://www.hopeforhh.org/donate/

When industry and community come together in the service of patients.πŸ”¬ Great conferences don't just happen β€” they're bui...
05/28/2026

When industry and community come together in the service of patients.

πŸ”¬ Great conferences don't just happen β€” they're built by people and organizations who believe the work matters.

We are deeply grateful to Rhythm Pharmaceuticals for their Gold Sponsorship of the 2026 Hope for HH Patient & Family Conference. Rhythm's commitment goes beyond the sponsorship β€” their own Dr. Ali Mohamadi will be presenting on hypothalamic obesity clinical trial outcomes, bringing the very latest science directly to our community.

This is what it looks like when industry and community come together in service of patients and families.

πŸ“… Virtual registration closes June 30

πŸ”— Register: https://2026HopePatientFamilyConference.eventbrite.com

For the first time ever β€” which path is yours?πŸ™‹ This year's 2026 Hope for HH Patient & Family Conference introduces some...
05/27/2026

For the first time ever β€” which path is yours?

πŸ™‹ This year's 2026 Hope for HH Patient & Family Conference introduces something brand new β€” dedicated breakout tracks designed specifically for you.

Which path is yours?

πŸ‘¨β€πŸ‘©β€πŸ‘§ Parents & Caregivers Path β€” Family connections, executive functioning support, caring for the caregiver, and connecting with your provider.

πŸ™Œ Adults Living with HH Syndrome Path β€” Real talk on life issues, mental health, executive functioning, and "How can we help you?" β€” a session built entirely around your needs.

These aren't generic sessions. They're intimate conversations with people who truly get it. And the best part? Virtual attendees get full access to both tracks β€” your registration, your choice.

πŸŽ₯ In a different time zone? Your registration is your all-access pass β€” including early access to the recorded sessions approximately two weeks post-event, so you can watch on your own schedule.

πŸ“… Virtual registration closes June 30 πŸ”— https://2026HopePatientFamilyConference.eventbrite.com

IT'S GO GRAY IN MAY DAY!ο»ΏHave you got your gray gear on today? Share your photos in the comments below!If you haven't al...
05/27/2026

IT'S GO GRAY IN MAY DAY!
ο»ΏHave you got your gray gear on today? Share your photos in the comments below!

If you haven't already, join our Facebook support community: https://www.facebook.com/share/g/1EazhSNbj9/

Our last section of the human brain: The Occipital Lobe!The Occipital Lobe is positioned at the back of the brain, above...
05/26/2026

Our last section of the human brain: The Occipital Lobe!
The Occipital Lobe is positioned at the back of the brain, above the cerebellum. Contains the primary visual cortex and visual association areas.

Primary Functions:
πŸ’œ Visual processing (color, shape, motion via the primary visual cortex)
πŸ’œ Visual perception (object, face recognition via visual association areas)
πŸ’œ Visual memory (storing visual information)
πŸ’œ Spatial vision (depth perception, motion tracking)

Epilepsy Manifestations:
πŸ’œ Focal seizures: Visual hallucinations (flashing lights, patterns). Eye movement abnormalities.
πŸ’œ Generalized seizures: Rare, may lead to tonic-clonic seizures.
πŸ’œ Auras: visual phenomena.

Relationship to hypothalamus (Indirect):
The occipital lobe has minimal direct neural connections to the hypothalamus but can influence it indirectly through visual processing that affects autonomic responses (e.g., visual stress or light sensitivity impacting hypothalamic circadian regulation). Its effect on the HPT axis is limited, though visual stimuli influencing circadian rhythms may indirectly modulate hypothalamic TRH secretion.

References:
https://www.sciencedirect.com/topics/psychology/prefrontal-cortex
https://pmc.ncbi.nlm.nih.gov/articles/PMC4867107/
https://pmc.ncbi.nlm.nih.gov/articles/PMC3181830/

No one faces HH Syndrome alone β€” anywhere in the world. πŸŒŽπŸ’œ This conference belongs to the entire global HH Syndrome comm...
05/26/2026

No one faces HH Syndrome alone β€” anywhere in the world. 🌎

πŸ’œ This conference belongs to the entire global HH Syndrome community β€” and we mean that.

We are proud to recognize our friends at Hope for Hypothalamic Hamartomas UK as a Gold Sponsor of the 2026 Patient & Family Conference. But this moment is about far more than a sponsorship.

Since their founding in November 2015, Hope for HH UK has been an extraordinary partner in this mission. For over a decade, Hope for HH and Hope for HH UK have stood shoulder to shoulder β€” co-funding critical HH Syndrome research initiatives and joining forces to bring the world's leading HH Syndrome specialists together at our international professional symposiums. Ours is a partnership built on a shared conviction that geography should never determine the quality of care a family receives.

That belief is what drives us to host symposiums that unite researchers and clinicians across borders. It is what fuels our joint investment in research that moves the entire HH Syndrome community forward. And it is what brings us together again this July β€” because when we face this together, we go further.

Whether you are joining us in Chapel Hill or virtually from anywhere in the world, this conference was built for you.

πŸ“… Virtual registration closes June 30

πŸ”— Register: https://2026HopePatientFamilyConference.eventbrite.com

Attend from anywhere in the world. 🌎🧠 You don't have to travel to Chapel Hill, North Carolina, to get answers from the w...
05/22/2026

Attend from anywhere in the world. 🌎

🧠 You don't have to travel to Chapel Hill, North Carolina, to get answers from the world's leading HH Syndrome experts.

The 2026 Hope for HH Patient & Family Conference goes VIRTUAL β€” and the lineup is unlike anything we've assembled before.

Imaging. Surgery. Focused ultrasound. Clinical trial outcomes. Endocrine management. SUDEP and seizure safety. Neuropsychology. Mental health. Eating sensitivities. Transition to adult care. And so much more.

Two full days. Leading physicians and researchers. Real answers for your family.

πŸŽ₯ Can't watch live? No problem. All registered attendees β€” in-person and virtual β€” receive exclusive early access to the conference recordings approximately two weeks after the event. Registered attendees get first access β€” no waiting, no wondering.

πŸ“… July 24–25 | Virtual registration closes June 30

πŸ”— Register now: https://2026HopePatientFamilyConference.eventbrite.com

Address

141 N Palmetto Avenue Box 941
Eagle, ID
83616

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