Research Grant Program These research grant awards are intended for established, experienced, independent investigators affiliated with a research or academic institution whose proposed projects seek to investigate hypotheses directly related to hypothalamic hamartoma syndrome. Proposals are scored based on the quality of preliminary data, research design, feasibility, investigator’s qualifications, and overall impact. Investigators applying for…
Kristy served as a Hope for HH board member from 2021 -2022
Hope for Hypothalamic Hamartomas drives education, support and research in this complex syndrome. We focus our efforts and funding on early detection, improved treatments, and managing HH as a complex medical syndrome with the goal of one day finding a cure. Goals Provide Information and Education to HH patients, caregivers, and healthcare providers Support HH…
Angela is mother to a 13 year old child who was diagnosed with HH at age 3. After two laser ablation surgeries through Texas Children’s Hospital and the ketogenic diet for epilepsy through Johns Hopkins Hospital, her child became seizure free at age 5. She was so thankful for all the support of the HH community,…
A Tribute to Cassie Skinner from a friend and fellow adult with HH, Carrie Fulcher Cassie and I connected around 8 years ago. When she came into my life, I remember feeling like we had so much in common. Not only because we were both adult’s with Hypothalamic Hamartoma Syndrome (HH), but she also had…
Monica’s HH Journey Monica was our second daughter, born full term on October 2, 2011. We were so excited to have 2 little girls to love! Our first daughter was a content baby and we didn’t expect anything different with our second daughter. But it wasn’t long until we realized something was bothering her. Some…
Logan’s HH Journey Logan was born on August 11th 2014 coming into the world at 7.3 lbs and laughing to the surprise of not only us but the doctors and nurses at delivery. We all thought this was very cute especially hearing of the death of Robin Williams that very same day, so we called…
A Hypothalamic Hamartoma Journey of Discovery The Beginning of Knowledge – Finding the Hypothalamic Hamartoma I entered the world as a work in progress after only 32 weeks. Several personal anatomical anomalies, including extra digits, required correction then and throughout the following years. I reached developmental milestones in my own time but eventually caught…
My partner Martin and I had difficulty getting pregnant; we opted to have IVF. My pregnancy was normal besides having to watch my blood pressure. In week 18 I was diagnosed with placenta praevia marginalis. However, this didn’t cause any further problems. I gave birth to my beautiful, wise boy on the 31st of July…
Becoming an Advocate Let’s start by defining an advocate. An advocate is someone who raises awareness, pushes for change, and makes facts known for those who are not fully being heard. When your loved one is diagnosed with autism, it is essential that you advocate for them to help their voices be heard. In…