Meet Michael Black, TESS Board of Directors Vice Chair

Q: What is your role at TESS Research Foundation?

A: I’m proud to wear a couple different hats, having recently been elected as vice chair of the board, serving as a family ambassador, helping with the website, and working on some graphic design projects.

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

A: As a board member, good governance is vital for our organization’s integrity and reputation. It ensures that our supporters and families trust TESS with their donations and time. As a father of a child with SLC13A5 Epilepsy, I remind fellow board members that their decisions directly impact real families affected by this disorder. Maintaining the website and other communications is crucial for raising awareness and sharing information, which is a significant part of TESS’s mission. The resources on the TESS website were invaluable to me when I first learned about SLC13A5 Epilepsy, providing education, support, and the reassurance that we were not alone. The website serves as our primary platform for sharing information and collecting donations for future research. I am excited to contribute to making it the best it can be.

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

A: My son, Rowan, inspires me daily with his enduring smile despite the challenges he faces. If my efforts can enhance his quality of life even slightly, it’s worthwhile. The incredible TESS community, including families, friends, researchers, and supporters, energize me as well. They tirelessly provide love and assistance to these children, while also striving for long-term solutions and treatments for a brighter future.

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

A: I’ve learned a ton from my work with TESS, but the biggest thing that I’ve learned is how a singular focus and a driving passion can allow even a small team to make a global impact. I love being a small part of that team, and I look forward to helping to grow that impact.