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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Welcome Volunteer Lauren Mellon to our team!

“The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” - DeAnn Hollis My son, Jack, was diagnosed at 15 months after a year of misdiagnosis.  He underwent laser...

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Brain Injury and Cognitive Function

Brain Injury and Cognitive Function March is Brain Injury Month and for many individuals with HH – the challenges of HH and those associated with a brain injury can be very similar. Fortunately, therapies designed to help individuals with a brain injury regain...

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Welcome Volunteer Angela Donn to our team!

“The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” - DeAnn Hollis My son, Eli, was diagnosed at age 3.5 with Hypothalamic Hamartoma.  While trying to navigate...

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Meet Kaitlyn

Kaitlyn's HH Journey We brought our perfect beautiful daughter home two days after she was born.  Soon we realized that we had a fussy baby who wouldn’t sleep unless we held her and was sometimes inconsolable.  When I took Kaitlyn to the pediatrician for her two-week...

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Launched New Content | News, Research & Resources

  News, Research & Resources recently launched new content on the Hopeforhh.org! If you haven’t visited the Hope for HH website recently, we encourage you to check out the newly updated and reorganized section on News, Research and Resources. You will find the...

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