Meet Maggie Nye, TESS Reporter

Q: What is your role at TESS Research Foundation?

My name is Maggie Nye, and I am 11 years old.  I am part of the Family and Community Advisors Team.  We are an informal group that volunteers our time to help raise awareness.

Q: How does the work you are doing have the potential to help those with SLC13A5 Epilepsy?

My main project is being the TESS Reporter and interviewing the people who help make the lives of our TESS Superheroes better.

Q: What inspires you to contribute your time and skills to TESS?

Tessa and Colton, my siblings with SLC13A5 Epilepsy, really inspire me to volunteer my time to TESS because I love them, and I would do anything to help them.

Q: Have you learned anything through your work with TESS Research Foundation that you’d like to share?

I have learned so much! First, I learned how to say SLC13A5 which is not easy to remember.  I like to remember it by thinking of the first letters of Salt Lake City then unlucky number 13.  SLC13A5 is the name of the gene that is causing problems for Tessa and Colton and all the other TESS Superheroes.  I have gotten to interview many people, like my siblings’ OT and PT and also some of the other siblings of kids with this disorder, which taught me a lot about other points of view and what everyone is doing to try to help all of these kids.  I can’t wait to bring you more interviews soon!