Meet Paula Gani, TESS Board of Directors Member

Q: Paula, what is your role at TESS Research Foundation?

A: I am a member of the TESS Board of Directors, the formal governing body of the organization. We make the final decisions on our roadmap to a cure, assist with fundraising, and help advance our mission to improve the lives of people with SLC13A5 Deficiency.

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

A: I am an attorney by training, so I am able to volunteer my time as a legal consultant. When TESS decides to fund a scientist or a research project, I write the funding contracts. I try to make sure that our agreements have the best interest of children with SLC13A5 Deficiency in mind. We do not want scientists working in silos so our contracts are designed to encourage open and collaborative research.

Q: Can you tell us a funny story about your work with TESS Research Foundation?

A: This is a serious disease, but there are moments of humor. For instance, when we were funding new mouse models of SLC13A5 Deficiency, I drafted a provision that made the sperm of the new mouse model more widely available to qualified researchers. It is not every day that an attorney drafts documents about mouse sperm!

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

A: Yes – I strongly encourage everyone to learn about the breakthroughs in gene therapy that have come about this year, including FDA approval of Zolgensma. There is great potential to cure debilitating illnesses, and the work of the researchers funded by TESS is getting us closer to a cure for SLC13A5 Deficiency.