Register TODAY for the Virtual Hypothalamic Hamartoma Patient Conference Hope For Hypothalamic Hamartomas is excited to host the international 2021 Virtual HH Patient Conference (October 1 & 2). Each day will be a half-day session starting at 9amPDT/12nEDT/5pmBST. We have scheduled these times to accommodate our international community. The focus of the event will include…
At the age of 20, my husband and I were considering having our first baby together. I had so many concerns going around in my mind. Could the medication I was taking cause harm to our baby? Will the baby have seizures like me? How will I manage the sleepless nights? What will happen if…
We are Mark and Kristy, first time mom and dad to Brett, age 18 months. We are relatively new on our HH journey, as Brett was diagnosed at 10 months. From the day of our diagnosis, Hope for HH has been our lifeline for support and information. We are so thankful to have found such…
Mark and I married 8 years ago, in our mid-thirties, and wanted nothing more than to be parents. Our journey to parenthood took the course of unsuccessful infertility treatments, as well as domestic newborn adoption. Brett was born on Saturday, October 5, 2019, however, we didn’t meet him until 5 days later in the hospital…
As part of joining Hope For Hypothalamic Hamartomas team of volunteers I was asked to share my story of ‘Why’ I was driven to join the organization and help others in the Hope For HH Community. ‘This is My Why’ I was 35 weeks pregnant with a healthy baby boy when my husband and I…
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.…
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