Board Member Spotlight: Leigh Hopkins

This month, we’re proud to shine the Board Member Spotlight on Leigh Hopkins, an economic development researcher and mom to Cameron, who was diagnosed with GLUT1 Deficiency in 2018 at the age of 8.

A Journey of Discovery and Advocacy

After Cameron first began showing symptoms around a year old, our family embarked on a long, uncertain search for answers. After years of testing and persistence (including a diagnosis of generalized epilepsy at age 5), finally getting the diagnosis of GLUT1 Deficiency brought both relief and a new mission for us: to understand, connect, and contribute to a better future for families like ours.

When we finally had a name for what was happening was the day we found our purpose. It changed everything about how we approached Cameron’s care and how we thought about the future. No day is without its challenges, but I can say that we’ve finally found a good rhythm in our day to day and managing Cameron’s symptoms. Now that Cameron is 14, we’re honored to help him start to take ownership of his care (medicine and diet) as well as lead communication with his teachers, doctors, and dieticians.

Building Connection and Community

Since that time, I’ve found my voice for family engagement, collaboration, and hope within the GLUT1 community. As one of the G1DF’s newest board members, I want to encourage others to get involved in the Foundation, whether it’s serving on a conference committee or attending a monthly parent Zoom meeting. Drawing on my professional background in research and community development, I bring a unique perspective to the Foundation’s work – connecting people, ideas, and opportunities for impact.

As a Board Member, Leigh helps guide initiatives that strengthen family support, advance awareness, and build bridges between researchers and the families they serve. “I’ve learned that the power of our GLUT1 community is in our shared experience,” she says. “Every family story helps shape what we know, what we fund, and how we move our families forward.”

Beyond the Foundation

Outside the G1DF Foundation, Leigh lives in Atlanta Georgia with her husband Jeff, Cameron (14), and Rohan (12). Leigh enjoys being active in her community and exploring nature with her family. Cameron, now 14, loves video games, science, martial arts, signing with the Decatur Children’s Choir, and listening to his favorite music. When he grows up, Cameron aspires to attend university at the University of New South Wales in Sydney Australia to become a geneticist.