This Is My Why | Lisa Soeby

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This Is My Why Lisa Soeby

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 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 share Lisa Soeby’s ‘Why‘. Lisa is a Co-Founder of Hope For HH and a passionate advocate for her son, CJ. Lisa is an inspiration to all the parents and caregivers who advocate fiercely for their HH loved one.

This Is My Why Lisa Soeby

Lisa Soeby
CoFounder & Vice President

This Is My Why – ‘Drive science, improve quality of life, and support others’

When my son was born 23 years ago, he was having 300 gelastic seizures a day. We were told there was no treatment available and to prepare for things to get “much worse”. There would be more seizure types, cognitive decline, and unmanageable behaviors. He would most likely be in a group home by age 5. My only thought at that moment was “not my son”! I was driven to create what didn’t currently exist.

There was no treatment in the US, so as a family we sought out a surgeon who was pioneering a surgical approach in Australia and we took my son for surgery. My son came back seizure-free and I worked to establish a Center of Excellence for HH surgery at Barrow Neurological Institute. Unfortunately, there was no support organization in the world to help us walk through the challenges yet to come. So, a small group of us HH Moms created one!

We are no longer “just Moms”! We are dedicated, and passionate individuals that will do whatever it takes to drive science, improve quality of life, and support others on their HH journey. It is this sense of community and creating what doesn’t exist yet that motivates me every day. Together we can continue to achieve what once was considered impossible!

What is YOUR ‘Why’

We want to hear from YOU!! Why do you support Hope For HH? If you’d like us to share your ‘Why’ with the HH community send an email to

Inspired to join the team? Send an email to for more information