Meet Courtney Lodato Alberti, TESS Board of Directors Member

How did you get involved with TESS?

My sister has two children with SLC13A5 Epilepsy; I am Tessa and Colton’s proud aunt! For the first ten years of Tessa’s life, we did not know what was causing her seizures. The number of tests she went through and watching her pain and suffering was incredibly heartbreaking. When Colton was born, a path to finding answers started to emerge. Having a niece and nephew with SLC13A5 Epilepsy has drastically impacted our entire extended family. We see firsthand how hard it can be. When Kim founded TESS Research Foundation, I joined the board as a way to support her, Tessa, Colton, and all children and families affected by this terrible disorder. Together with my husband and our children, I continue to seek opportunities to raise awareness for SLC13A5 Epilepsy and help to bring in donations that fund research for better treatments and provide education and support for families.

What inspires you to contribute your time and skills as a board member?

My niece and nephew inspire me every day – these two are the strongest, most amazing little souls I know. I have witnessed firsthand how much they have suffered because of this disease and am reminded every day of the importance of health and access to care. There is no limit to what I will do to support Tessa, Colton, and other affected children.

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

This is the most inspiring group of people – from the parents and caregivers who give 150 percent every second of every day to care for their children to the researchers and scientists who are curious, ask questions, and whose dedication is ensuring that we are always making progress toward better outcomes. All of them are true superheroes and inspire me to want to do even more.

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

As a mother myself, I know that a parent’s biggest fear is having a child with a serious health problem, seeing their pain, and being powerless to stop their suffering. Uncontrollable seizures, not being able to talk or walk, and needing 24-hour care for a lifetime – this disease is truly relentless. I urge everyone to learn about SLC13A5 Epilepsy and to share their knowledge with others. You never know who might need to know about genetic testing, need access to information, or want to be connected with others in a similar situation. I hope that our work can make someone’s journey with this disease a little easier.