19 Dec Meet Paula Gani Noah, Secretary, TESS Board of Directors
How did you get involved with TESS?
My son attended an inclusive preschool, where I met Kim Nye and her children. We got along well and started meeting for monthly “say-anything” dinners with other special-needs moms. It was so important to be able to discuss our challenges with our kids and families and whatever was going on in our lives. We continued our monthly dinners for more than a decade! During this time, Kim shared the symptoms of what was later identified as SLC13A5 Epilepsy and when TESS Research Foundation was launched, I was invited to join its Board of Directors. My background is in law and I am grateful to be able to lend these skills to TESS.
What are you most proud of that TESS has accomplished during your tenure as a board member?
When I first joined the board, the organization was a one-woman show (Kim!) so it has been incredibly meaningful to watch TESS develop and grow. There are now three paid staff, including dedicated scientific and development directors and an operations manager. In addition, in the earlier years, there were few researchers whose work focused specifically on SLC13A5. Thanks to TESS, the number of scientists engaged in SLC13A5 research has grown tremendously, and we are getting closer and closer to clinical trials. I have also loved seeing the progression of our clinical research (Natural History Study) from initial conversations to having three sites that are actively seeing children with SLC13A5 Epilepsy and their families!
What inspires you to continue contributing your time and skills as a board member?
I am inspired by the progress of our research investments and the strength of our science. In a short time, we have gone from conversations, hope, and potential to the development of complex programs and real progress. We are very selective and specific with our grants and the type of investigations we fund. There is no waste, and our seed funding has been turned into huge grants from the NIH. TESS is a very diligent and hardworking organization and I am so moved by the commitment of our staff, board members, and broader TESS community toward a common goal: finding a cure for SLC13A5 Epilepsy!
This is our second interview with Paula. You can read her first interview here.