Meet David

Meet David

If you met David or indeed if you saw David perform you would be surprised to learn that David had a hypothalamic hamartoma (HH), had surgery in the Barrow in Phoenix at age 12 and had huge challenges along his journey to success. David’s HH presented itself to us...
Why Do The Comorbidity Survey?

Why Do The Comorbidity Survey?

We are only a week into the HH Comorbidity Survey and the participation has been amazing! We hope to have at least 200 participants by the end of July and it looks like we can certainly make that number and perhaps more! A huge thank you to all who have already...
Neurological Comorbidities

Neurological Comorbidities

Neurological Comorbidities and Hypothalamic Hamartomas (HH) Probably the most studied comorbidity associated with hypothalamic hamartomas (HH) is epilepsy. For many individuals with HH, it is intractable epilepsy – uncontrolled seizures that are frequent and...
Psychiatric and Behavior Symptoms

Psychiatric and Behavior Symptoms

While other hypothalamic hamartoma (HH) comorbidities have been studied in more depth – the psychiatric and behavior components of this rare syndrome have not. We, as a community of patients and caregivers, have long struggled to understand the reasoning behind what...
Thriving with HH

Thriving with HH

Hope for HH recently caught up with Sierra Crislip, a young woman that is not just living with HH but thriving with HH. She recently became a published author with her first book titled, Weird Girl with a Tumor! It is a very powerful look into the life of a young girl...