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 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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What Is That Seizure Called Now?

Diagnosing and classifying seizures recently became easier and more precise. The International League of Epilepsy (ILAE), the world’s main scientific body devoted to the study of epilepsy, revised its terminology in order to recognize that some seizure types can have...

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Meet Abby

Our daughter’s name is Abigail “Abby” Joyce Smith, she is 12 years old now, born December 2005. In utero, the doctors noticed she had a small dilation in one of her kidneys but everything else was perfectly normal. She had a normal birth and she had an ultrasound on...

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