Hot Topics

Look Who's Coming to the DC Family Forum

It's less than 2 weeks away. It includes guests from as far as London, California, and Canada.  ...Read More >

Ketogenic Diet and HH

Many families with HH and other refractory (difficult to treat) seizures search for options other ...Read More >

Transition Challenges and Hypothalamic Hamartomas (HH)

For many young adults with HH, the transition from school to work or higher education can be compl...Read More >

Join the live webcast from AES 2017 | Judith Hoyer Lecture

For NEAM 2017, get informed on the current state of epilepsy. Mark your calendar now for 12/1 for ...Read More >

Meet Diana – New HH Program Coordinator at Phoenix Children’s Hospital (PCH)!

    Hope for Hypothalamic Hamartomas (Hope For HH) is happy to announce the new HH Pro...Read More >

Listen as Dr. Helen Cross describes findings from a recent study regarding cognitive and behavioral challenges in patients with HH.

Newly Diagnosed

Getting a new diagnosis can be frightening and overwhelming. There is a whole new vocabulary you have never heard before, and not understanding it can mean confusion and further isolation. Start here to learn the basics and make informed decisions.

 

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For Professionals

Correctly diagnosing a hypothalamic hamartoma (HH) can be challenging for even the most experienced professional. Start here to gain a better understanding of the comorbidities associated with a hypothalamic hamartoma and the appropriate diagnostic tools available to providers today.

 

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For Donors

Your contributions are a critical part of our efforts to provide support to patients and families, educate medical professionals and therapists, and to encourage researchers to seek answers to this very complex condition. Start here to read more and support our on-going efforts.

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1 in 200k diagnosed worldwide

Often goes undiagnosed or misdiagnosed for years

Seizures commonly unresponsive to medication

Can result in cognitive and behavioral deterioration, learning disabilities, endocrine dysfunction and sleep disturbances

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSunday, December 10th, 2017 at 5:00am

As a family we may not have it all together, but together we have it all.
#hopeforhh

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, December 9th, 2017 at 8:28am

If you were unable to attend the Child Neurology Foundation's live webinar on SUDEP, they've now made the recording available on their YouTube channel.
https://youtu.be/fmghr97Ymrc
#SUDEPAware #Epilepsy #AimForZero

Hope for Hypothalamic Hamartomas
Let's Talk About SUDEP: A Conversation with Parents and Doctors
Let’s talk about Sudden Unexpected Death in Epilepsy (SUDEP): A Conversation with Parents and Doctors November 17th 12:00pm - 1:15pm ET One in 26 Americans w...
youtube.com
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, December 8th, 2017 at 7:16pm

"Wherever you go, whatever you do our guardian angel GRACE will be watching over you."
#HOPEFORHH #WHERETHEREISHOPEYOUWILLFINDGRACE #FOREVERINOURHEARTS #GRACEWEBSTER #SUDEPAWARENESS

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