Hot Topics

What Is That Seizure Called Now?

Diagnosing and classifying seizures recently became easier and more precise. The International Lea...Read More >

Meet Abby

Our daughter’s name is Abigail “Abby” Joyce Smith, she is 12 years old now, born December 2005. In u...Read More >

Meet Elleanor

Meet Elleanor On June 11, 2012, we welcomed our first child, Elleanor, to the world. She was heal...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 HamartomasTuesday, August 21st, 2018 at 5:55am

As the school year Begins, it is so important to have an open discussion about disabilities... "children are rarely taught how to be open to disabilities and that it’s OK to become friends with someone no matter who they are or what disability they might...

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, August 18th, 2018 at 3:18am

Today is National Nonprofit Day! Wonder what motivated the founders of Hope For HH to start the foundation nine years ago. Read our latest blog from Lisa Soeby.

https://bit.ly/2OIVHHa

#nationalnonprofitday #hope

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasFriday, August 17th, 2018 at 6:19am

Epilepsy can bring additional considerations and challenges for students and their families. A new article from Epilepsy Foundation of America discusses tactics and provides tools for helping with the transition back to school, including how to prepare the school staff.

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