Pituitary Awareness Month

Pituitary Awareness Month

Pituitary Awareness Month - Adrenal Insufficiency October is Pituitary Awareness Month – and you may be asking yourself “Why should I care if I, or my loved one, have an hypothalamic hamartoma (HH) and NOT a pituitary tumor? Well, the hypothalamus is the master gland...

read more
Meet Dr. Christine Bulteau

Meet Dr. Christine Bulteau

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
Saving Joelle

Saving Joelle

Joelle Rue was born in April of 1994. During Joelle’s 4 month well baby check-up her doctor told me to go to the hospital for an ultrasound of her head. There it was discovered that she had a large cyst and a tumor-like structure in the center of her brain.  She...

read more
Meet Dr. Hanna Richardson

Meet Dr. Hanna Richardson

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
Meet Max

Meet Max

Our Mr. Max was born on August 25, 2009. Besides a little morning sickness in the beginning, I had a wonderful pregnancy, and his delivery was without any complications. His big brother, Jack, dad, and I could not wait to meet the little man that was going to complete...

read more
Meet Dr. Kerstin Alexandra Klotz

Meet Dr. Kerstin Alexandra Klotz

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
Meet Francesco

Meet Francesco

Appreciate the little moments in life. That’s what my almost three-year-old son has taught me. Francesco was born, full-term and completely healthy boy, on December 27, 2016. He came into a world that loved and cherished him; a support system of three beautiful step...

read more
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...

read more
Meet Dr. Clifford B Saper

Meet Dr. Clifford B Saper

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
Meet Dr. Varina L. Boerwinkle

Meet Dr. Varina L. Boerwinkle

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
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...

read more
Meet Dr. Maximilin Geiger

Meet Dr. Maximilin Geiger

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
Meet Dr. Peter West

Meet Dr. Peter West

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
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...

read more
Meet Dr. Samuel Berkovic

Meet Dr. Samuel Berkovic

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
Meet Dr. Helen Cross

Meet Dr. Helen Cross

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more
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...

read more
Meet Guilherme

Meet Guilherme

[see translation here] My name is Renato and I live in Brazil with my wife and 2 kids. I am here to tell you about my oldest son, Guilherme. He was born in 2011. Along with the hypothalamic hamartoma (HH), Guilherme also was born with polydactyly of both hands and...

read more
Meet Dr. Kevin Yuen

Meet Dr. Kevin Yuen

Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas - a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities...

read more

SUBSCRIBE TO BLOG VIA EMAIL

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 104 other subscribers

CATEGORIES