Meet Charlotte (Charli)

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....
Meet Layla

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...
Meet Anniston

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...
Laser Ablation for HH Coming to Europe!

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...
August 17th – National Nonprofit Day

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. I had heard...
What Is That Seizure Called Now?

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...