Meet Nicole Windisch, TESS US Family Outreach Coordinator & SLC13A5 Parent

Q: What is your role at TESS Research Foundation?

My role is the Head of Family Outreach at TESS.

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

My work is mostly to help keep the parents connected and involved with each other and with TESS Research Foundation. I also created our bracelet and shirt fundraisers. 100% of the proceeds go towards TESS for research. The more parents that are involved, the better chance we have for clinical trials to help our children. The more money we raise, the more research we can do in order to continue and grow. By having the parents stay connected, our affected children benefit from us being able to share our experiences with each other and what is working for our child. For example, different medications or equipment that we some of us parents might otherwise not have known about.

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

My daughter Meredith, who is affected by SLC13A5, is my number one inspiration. She is such a tough little cookie. I do everything I can to help Meredith. Kim Nye’s (TESS President) hope and dedication to this cause is also super inspiring to me. She is an amazing mom who is going to the ends of the earth for all our affected children. I am so happy to be able to help Kim and the Foundation in any way I can.

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

I have learned so much. From how each child is so similar yet very different to how a non-profit organization runs. I have also learned a lot about medical research and clinical trials. Most recently, I learned what a natural history study is and how important the study is for our children.