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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Meet Elleanor

Meet Elleanor On June 11, 2012, we welcomed our first child, Elleanor, to the world. She was healthy and we were able to take her home and try our hand at this parenting thing. She was growing normally, but would make this weird grunting sound. At two months old I...

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Independence Day

The Fourth of July is always such a fun day of celebration in the US. It represents so much for our country and the sacrifices that were made for a chance at a new life. It is celebrated with barbeques, family gatherings and fireworks!  Independence can have a very...

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Meet Elizabeth

  HH is for life. In 1957 my wife was born, it was a normal birth but within weeks it was clear all was not right with Little Elizabeth. Doctors in those days had no idea how to diagnose complicated conditions in babies. As Elizabeth grew Epilepsy was confirmed but no...

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Meet Carson

Carson’s story Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound revealed that Carson had a very large cyst in his brain. Further follow up suggested that it was coming from the hypothalamus region. We delivered normally at 39 weeks,...

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SUDEP Awareness Series | What is SUDEP?

  SUDEP Awareness Series | Part 1 - What is SUDEP? Hope for HH has been made aware of two young adults with HH that recently passed away. Both cases are suspected of being related to SUDEP (Sudden Unexpected Death in Epilepsy). For most HH families – SUDEP is an...

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Meet Glen

I am Glen B Schallman , 59 yrs old was diagnosed back on March 1, 2002, by Dr. Rekate at the age of 43 with a 2.5 cm Hypothalamic Hamartoma, and 2 other very rare brain conditions (Unilateral Polymicrogyria and Unilateral Schizenchephaly). About 2 months after being...

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Arizona Gives Day

What will you be doing April 3rd? For those of you living in Arizona (and elsewhere) – there is an incredible opportunity to support the work being done by Hope for HH! Tuesday, April 3rd is Arizona Gives Day and is a statewide, 24-hour, online giving campaign takes...

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