Board Member

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,…

Cassie Skinner

Cassie Skinner (1972 – 2023)

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…

Meet Monica

Meet Monica

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…

Meet Adam

Meet Adam

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…

Meet Clemens

Meet Clemens

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…

Overlapping Characteristics of Hypothalamic Hamartoma Syndrome and Autism Spectrum Disorder

Overlapping Characteristics of Hypothalamic Hamartoma Syndrome and Autism Spectrum Disorder

Overlapping Characteristics of Hypothalamic Hamartoma Syndrome and Autism Spectrum Disorder When considering if an individual has an Autism Spectrum Disorder (ASD) in addition to HH, there may be some (or a lot of) overlap, and it is very possible to have both of these conditions. The art of diagnosing ASD comes from a trained professional…