Update on JoJo

Update on JoJo

We first introduced JoJo after his surgeries in 2011 when he was 19 months old.  He had a full removal of his large Type 4 Hypothalamic Hamartoma (HH) after two surgeries, a craniotomy to remove 90% of the HH and then endoscopic to remove the remaining 10%. ...
Comorbidities and HH

Comorbidities and HH

So just what is a comorbidity and why is it important to an individual with a hypothalamic hamartoma (HH)? In medicine, a comorbidity is defined as a condition or symptom that occurs, or is seen more frequently with, a separate primary medical condition. In the case...
CNF Behavior Survey

CNF Behavior Survey

Hope for Hypothalamic Hamartomas (HH) is proud to partner with the Child Neurology Foundation (CNF) to conduct a brief survey to understand the caregiver’s experience when it comes to managing behavior in children with neurologic conditions.   For many...
Meet Kate

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...