Meet Guilherme

[see translation here] My name is Renato and I live in Brazil with my wife and 2 kids. I am here to tell you about my oldest son, Guilherme. He was born in 2011. Along with the hypothalamic hamartoma (HH), Guilherme also was born with polydactyly of both hands and...

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Meet Dr. Kevin Yuen

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

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Meet Dr. Arthur Cukiert

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

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Endocrine Comorbidities

In my last blog, I introduced the concept of comorbidities and hypothalamic hamartomas (HH). If you happened to miss that blog, you can read it here. In that blog, I noted that in medicine, a comorbidity is defined as a condition or symptom that occurs, or is seen...

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Meet Dr. Holan Liang

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

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Update on JoJo

We first introduced JoJo after his surgeries in 2011 when he was 19 months old.  He had a full removal of his large Type 4 Hypothalamic Hamartoma (HH) after two surgeries, a craniotomy to remove 90% of the HH and then endoscopic to remove the remaining 10%. ...

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Meet Aiden

As soon as Aiden was born he started having what we called at that time “tiny panic attacks” where he would have a very rhythmic cry for a couple of seconds and then his eyes would roll upward and to the left for a second while his arms flew out to his sides. It would...

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Comorbidities and HH

So just what is a comorbidity and why is it important to an individual with a hypothalamic hamartoma (HH)? In medicine, a comorbidity is defined as a condition or symptom that occurs, or is seen more frequently with, a separate primary medical condition. In the case...

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CNF Behavior Survey

Hope for Hypothalamic Hamartomas (HH) is proud to partner with the Child Neurology Foundation (CNF) to conduct a brief survey to understand the caregiver’s experience when it comes to managing behavior in children with neurologic conditions.   For many...

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Meet Calebe

[see translation here] Hello HH community, my name is Calebe, I am 9 years old.  I'm from João Pessoa, Paraíba, Brazil. I have a weird hypothalamic hamartoma (HH). I was diagnosed with hypothalamic hamartoma (HH) in 2018. However, from my first years of life I...

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Meet Dr. Michael Hildebrand

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

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Meet Amanda

“Amanda, it’s time to get your shot now! Go grab your Birthday Bear.” I was diagnosed 21 years ago with a brain tumor when I was just one year old. When I think about having my brain tumor, I can remember the various scenarios and feelings that I went through....

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EpiCare | News from Hope For HH UK

  EpiCARE News from Hope for HH UK Annual General Meeting (AGM)   EpiCARE is one of 24 European Reference Networks established by the EU in 2017-18.  ERNs operate as virtual networks involving specialist healthcare providers across Europe.  They aim...

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