Meet Bob Wassman, MD, TESS Board of Directors Member and Liaison to the TESS Scientific Advisory Board

Meet Bob Wassman, MD, TESS Board of Directors Member and Liaison to the TESS Scientific Advisory Board

Q: How did you get involved with TESS?

A: I learned about TESS from Lee Scheuer, a fellow board member and a childhood friend, who knew of my interest and expertise in genetics. Genetics is a super-specialty that crosses many fields, including neurology, gastroenterology, and endocrinology. Most genetic disorders (including SLC13A5 Epilepsy) are rare diseases. After I met with Kim Nye, I was invited to join the board and now serve as the liaison between the Board of Directors and TESS’ Scientific Advisory Board.

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

A: After many years, I am now at the point in my career where I can and want to contribute my experiences with what I have seen in kids and families with rare disease. For so many years, there have been few to no answers, including what causes a rare disease. At TESS, we can now not only answer this question, but see how our investments in SLC13A5 research are helping science to advance toward new treatments and hopefully, a cure. I am excited that the work that TESS is doing is a bridge for possibility, not only for this genetic disorder, but for other rare diseases, too.

Q: What is something you’d like to share with others interested in learning more about SLC13A5 Epilepsy?

A: SLC13A5 Epilepsy is a citrate transporter disorder. These disorders present a real conundrum: while more is known about citrate transport in general, less is known about its impact on the brain. There are so many avenues we can pursue, and our overall strategy is to diversify our research interests by pursuing a range of projects from gene therapy to small molecule treatments. Personally, I wonder if there is something obvious or simple that we are overlooking, and if recognizing this could make a huge difference in solving the whole problem.

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

A: I greatly admire the energy of everyone involved with the TESS community. There is a unique passion for understanding, treating, and curing this disease. I am also incredibly inspired by the dedication of families and the sharing of their child’s story. Their openness to answer questions and to participate in research opportunities will lead to the answers that we are all seeking.

Rare disease impacts everyone, and there is a tendency to believe that “I don’t know what is in my cards. Maybe I should help others.” I believe that sometimes disabilities create abilities – the ability to be empathetic, to want to be involved, to participate in day-to-day care, to give generously. Scientific progress tends to be slow but TESS has made great strides in an incredibly short amount of time. Who knows what can happen next?

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