Joshua Potts

Joshua Potts (1988 – 1999)

A Tribute to Joshua Potts from his mom Hello, my name is Jill. I would like to tell you about my guardian angel, my son, Joshua. He is forever in my heart. Josh was a very courageous, affectionate, and loving child. There was this special sweetness that surrounded him. Josh was one of those people that…

Meet Debbie

Meet Debbie

Debbie’s HH Journey My name is Debbie Menzies, I’m 60 years old, and I survived an undiagnosed Hypothalamic Hamartoma for 55 years. Born Deborah A. LeBorgne, the youngest of six children, I was raised in Westbrook, Maine. My youngest memories are as a 5-year-old, very happy, well-adjusted, and outgoing little girl. Cruelly, those memories soon…

Research Grant Program

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 DeBowes

Board Member (2021 - 2022)

Kristy served as a Hope for HH board member from 2021 -2022

Our Mission

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…