Finding Me – CJ Soeby

Finding Me – CJ Soeby

We are so excited to have CJ Soeby as today's guest blogger! CJ is truly an amazing young man who's story past and present continues to inspire all who have had the honor of meeting him. CJ's love of life, family, and helping others is ingrained in his soul. Thank you...

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Meet Madeleine

Meet Madeleine

Madeleine was born on September 5th, 2004. Everything appeared normal until some unusual symptoms at 6 months old. Her diagnosis from Great Ormond Street was quick, she had a Hypothalamic Hamartoma (HH), a rare type of brain tumor. We were constantly watching for...

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Stories of Hope

Stories of Hope

Isolation, Lockdown and Social Distancing have become buzz words we will forever associate with this time of COVID-19. While you don’t have to go far to hear stories that make us fearful – you can also find stories of hope, kindness and connecting – like never before....

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Jojo’s Great Life

Jojo’s Great Life

We are thrilled to be sharing the story of an incredible young man today! His name is Jojo Canariato. His Mom, Stacie, shared their family story with us previously and you can read the latest update here. However, today we get to hear from Jojo himself! He is now 10...

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Sleep Awareness Week

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...

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Rare Diseases and Employment Challenges

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...

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Meet Chloe

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....

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Welcome Intern Afsoon Movahed To Our Team!

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...

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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...

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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...

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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...

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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...

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