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 to the HH Community. Each board member was asked the following questions: Why…
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 organization? Today we…
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 himself up and because of this…
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 pandemic but we are adjusting as necessary to ensure we continue to…
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 during my school-age years which lead me to write my first…
HH Comorbidity Survey – Initial Results Neurological issues associated with hypothalamic hamartomas have been well studied in the last 10 plus years. However, when it comes to the cognitive challenges experienced by individuals with HH, the number of studies is extremely limited. While professionals can agree that cognitive abilities and behavior are often impaired in…
There are many tools a physician can use to diagnose a patient with epilepsy. With all these options, you would think it would be easy to find the answers they are looking for. Let me fill you in on a little secret about diagnostic testing. Testing is often used to rule out a specific diagnosis.…
HH Comorbidity Survey – Initial Results In today’s blog on the initial HH Comorbidity Survey results, we are going to share the surgical treatment spectrum as reported by survey participants. This information was shared by individuals with HH or caregivers of individuals with HH. It is important to note that individuals may have had more…
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 CJ for all you…
HH Comorbidity Survey – Initial Results Today we continue our blog series discussing the initial results of the HH Comorbidity Survey on HH comorbidities, or co-existing conditions. We believe these symptoms and conditions may be un-diagnosed or under-diagnosed as a part of the HH Syndrome. If you have not read the first blog in this…