This Is My Why | Lisa Soeby

This Is My Why | Lisa Soeby

As we continue through International Hypothalamic Hamartoma Awareness month we are sharing the 'Why' of the Hope For HH board members. They were asked to share their reasons for being part of this organization and for generously volunteering their time and expertise...

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This is My Why | Kathy Jensen

This is My Why | Kathy Jensen

During our annual board training, each board member was asked to describe their 'Why'. Why do you support Hope For HH? Why do you volunteer your time? Why is Hope For HH important to you and your family? Why do you feel it is important to be an active member of the...

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Meet Lou

Meet Lou

Meet Lou - A Story of Hope Lou’s story, like many others on this site, begins with a series of misdiagnoses. When he was an infant he was making an odd sound — a  repetitive ‘ho-ho’ that wasn’t very laughter-like. Our baby would make noises every 15 minutes, waking...

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This Is My Why | Kimberly Ranson

This Is My Why | Kimberly Ranson

Our team recently participated in board training and a mid-year strategic planning session. Due to COVID-19, both of these sessions were held virtually rather than in person as we had hoped. Like most organizations, our small nonprofit is feeling the impact of this...

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A Story of Kindness | Sierra

A Story of Kindness | Sierra

My name is Sierra Crislip. I’m an hypothalamic hamartoma (HH) survivor. Although my HH was removed at an early age, it left me with an invisible disability. I have struggled since then with high social anxiety and a learning disability. I also experienced bullying...

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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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