Meet Kim Nye, TESS Founder & Executive Director

Meet Kim Nye, TESS Founder & Executive Director

Could you describe the multiple hats you wear at TESS Research Foundation?

I have the best job! I get to work with all our stakeholders – families, researchers, doctors, business partners, donors and our TESS staff. I build teams and solve problems every day. That team may be a group of key opinion leaders who are helping us communicate with the FDA, a team of volunteers helping us organize a conference, or our TESS team writing a grant or publishing data. I am determined to drive research and help develop better treatments for SLC13A5 Epilepsy. It can be a very emotional job because I am often the first person who speaks to a newly diagnosed family or to families who are in the middle of a crisis. I am forever grateful that families trust me and share their journey with SLC13A5 Epilepsy with me. 

What are some of the biggest successes you’ve witnessed/best memories since you founded TESS in 2015? 

When we started TESS, we were only a handful of families, doctors, and researchers with very little funding and almost nothing known about the disease because it had just been discovered.  My family had a heartbreaking rollercoaster of misdiagnoses and a 10-year diagnostic odyssey. Today babies are being diagnosed within weeks of their birth. We have a much clearer picture of the course of the disease and a solid strategy to develop treatments that address the underlying cause of the disease. My favorite memories are our conferences and fundraising events when we bring together all the people who make our progress possible.  

How do you juggle being a parent of four, including two children with SLC13A5 Epilepsy, and your professional work with TESS?

The juggle is real! Before we started TESS, I was not very good at asking for or accepting help. Now I ask for help every day. I am so grateful for my husband, my mom, and family who help with caregiving so that I can have a professional life in addition to my home life. If the pandemic taught me one thing it is that I need a community– of teachers, coaches, friends– to help my children and my family thrive.  

I am incredibly proud of and grateful for our TESS staff. We are a true team that helps each other to make sure that projects make it across the finish line. There are no egos and the goal is crystal clear: improve the lives of families impacted by SLC13A5 Epilepsy.  

I also tend to start my mornings very early– a quiet house, a laptop, and a cup of coffee at 4:30 am are my happy place.  

What brings you the greatest hope?

The kids! It is impossible to hold a child with SLC13A5 Epilepsy in my arms and not want to give them the world. Kids with SLC13A5 Epilepsy suffer from life threatening seizures, and they work hard every minute of every day to learn tasks like swallowing and sitting that many of us take for granted.  

And I see the healthy siblings of our TESS Superheroes who give me so much hope for the future. These siblings are selfless, resilient, and mature beyond their years. They do not advertise their adversity; they rise to the occasion. I hope they know I see them and admire them immensely.

How can others help make a difference for children and families with SLC13A5 Epilepsy? 

Continue to champion our cause! Raise awareness and funds. Our kids are spending too much time in the hospital; they are suffering too much and dying too young. One person really can make a difference. We need you.  

If you know a TESS Superhero, keep showing up. Make it a part of your weekly routine. Get to know our kids. Learn about seizures. Grieve with us; laugh with us; check your judgment at the door. Join us on this journey.

What is the best thing about being part of this community?

The people! Rare diseases suck. But the people are the best people you will ever meet. Our families are facing the unthinkable but still find hope and joy amid the grief. Our researchers and clinicians believe the science exists to help our children and they are rolling up their sleeves to catch this disease up to science. Our Board of Directors and Scientific Advisory Board are helping us create better drugs faster. And none of it would be possible without our donors. I am blown away by the grandparents, teachers, and friends who find the capacity to give and give again. Community, purpose, and love— it doesn’t get better than that.

Would you like to make a donation in honor of Kim?