Sleep Awareness Week
Sleep – it seems like we can never get enough of it! We invest in Fitbits and Apple Watches to track it, and millions of dollars are spent on the perfect sleep aids, yet it seems like no matter what we do, we can never get enough. This is even more true for...
Rare Diseases and Employment Challenges
We are excited to bring you another in our series of blogs by our Intern Afsoon Movahed. Afsoon was able to interview Dana Lockwood, an adult with HH, and share his experiences with seeking job employment. Today’s blog is both a point of view for some and a guide for...
An Exciting New Approach to Genetic Diagnosis of Children with HH
Hypothalamic hamartomas (HH) have long been described in medical literature as sporadic (random) in their occurrence, and the precise cause has yet to be determined. The identification of genes associated with HH can help us better understand how to treat and diagnose as well as understand the normal development and function of the hypothalamus.
Challenges Of Having A Sibling With A Rare Disease
Hello Everyone, My name is Afsoon Movahed and I'm a Hope For HH intern and guest blogger. Today’s blog is an incredible story of love and compassion. So often we focus on the individual with a hypothalamic hamartoma (HH), but we know that HH impacts an entire family....
Meet Chloe
In October 2018, we first noticed Chloe having what we called staring episodes. She would all of sudden have a blank facial expression and not respond to us. These episodes would last for 45 seconds - 1 minute. Afterward, she would seem confused and sometimes tired....
Welcome Intern Afsoon Movahed To Our Team!
Hope for HH would like to introduce and send a warm welcome to the newest member of our team – Afsoon Movahed! Afsoon is joining us as an Intern and will be working on a wide variety of projects. One of those projects will be blogs. She will be interviewing some our...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...