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...
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...
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,...
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...
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...