Meet Kevin McDonnell, TESS Board of Directors Treasurer

Q: How did you get involved with TESS?

A: My connection to TESS Research is deeply personal. SLC13A5 Epilepsy is a rare disease that directly affects my family, particularly my lovely niece, Tessa, and nephew, Colton. Their sweetness and warmth melt my heart every time I see them. Knowing there are hundreds, if not thousands, of families struggling with this condition galvanizes a basic instinct to care for one another. Joining the board empowers me to actively contribute and drive advancements in finding a cure. Instead of feeling powerless, I’m truly thankful for the chance to make a meaningful contribution.

Q: What inspires you to contribute your time and skills as a director on the TESS board of directors?

A: What has already been accomplished is undeniably inspiring. A decade ago, this condition was unknown. Thanks to TESS, the individual gene accountable for this ailment was identified, and the scientific community has united to learn more about citrate transporter disorder and to develop a particularly promising gene therapy. What’s truly remarkable is how this discovery has reached families worldwide. By pooling insights from each affected individual, our scientific understanding has been greatly enhanced.

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

A: Progress in medical research is ever-accelerating. I have learned how scientists approach challenges and use creative concepts to expand their knowledge and understanding. SLC13A5 Epilepsy is caused by a single gene, and perhaps the insights we gain might also help find cures for other monogenetic diseases like cystic fibrosis, sickle cell anemia, and Tay-Sachs disease.

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

A: Help us spread awareness about SLC13A5 Epilepsy and the impact it has on children and families. By following us on social media and liking our posts, you help us reach more people who can support our research!