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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Meet Sofia

[see translation here] Hello, my name is Luis Paulo and I'm the father of the little Sofia. I'm writing this blog on Hope For HH share a little of Sofia's HH story. I'm hoping this will help spread information about hypothalamic hamartomas and the Hope For HH...

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Meet Kate

When Kate was born in August of 2014, in Fargo, ND, the nurses immediately commented on how ‘vocal’ she was. We were a sleepless family, as she would always wake in the night, making her ‘crying noise.’ She often had episodes throughout the week, where it would last...

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Meet Charlotte (Charli)

Echoing so many of your stories of HH (hypothalamic hamartoma) discovery, Charlotte was born on the 22nd July 2004 in Brisbane, Queensland, Australia. My pregnancy was not complicated, I did have gestational diabetes, but a mild form that was controlled by diet....

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Meet Layla

Layla is our sweet Valentine baby, born February 14, 2014. She arrived 10 days past her due date in the biggest snow storm that year. We joke that she has been doing things her own way since before she was born. She is very spunky, strong willed and quite the...

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Meet Anniston

Josh and I found out we were pregnant with Anniston on our one year engagement anniversary (about 2 months before we got married) - the pregnancy was unplanned but we were both excited and felt blessed to have been able to conceive so quickly. During my pregnancy I...

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Laser Ablation for HH Coming to Europe!

Medtronic recently announced they received clearance via the CE (Conformite Europeenne) Mark to launch the Visualase MRI-Guided Laser Ablation System in Europe. This is great news for international HH patients that have been unable to use private pay insurance to...

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August 17th – National Nonprofit Day

Today is National Nonprofit Day. What kind of person starts a nonprofit anyway? I used to think it had to be someone that was a probably a celebrity, really smart, well connected, had access to a great deal of money and probably had lots of business sense....

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