IDefine was founded in 2020 by a group of U.S.-based parents seeking answers for their children living with a Kleefstra Syndrome diagnosis. However, because KS is rare and it knows no borders, in just over a year, the organization has intentionally connected with experts worldwide and established a global presence.
Dr. Tanja Zdolsek Draksler, a research project manager in information technologies at the Jožef Stefan Institute (JSI) – the leading Slovenian scientific research institute specializing in natural sciences, life sciences and engineering – is one of those experts. She has also played a key role in helping IDefine make international connections.
Tanja lives in Slovenske Konjice, Slovenia with her husband, Martin, and their daughters Zala, 7, and Adja, 5, who was diagnosed with KS in 2019. Although Adja is a very happy child who enjoys her swing, books, swimming, helping out in the kitchen, and being surrounded by family, Tanja feels an urgency to take action.
Because she has expertise with research projects dealing with artificial intelligence, machine learning, and data mining, among other areas, Tanja began reaching out to see where her skills might be able to make a difference. First, she connected with Dr. Tjitske Kleefstra about possible research collaborations and working on joint European research proposals. Then, after learning about IDefine around the time of its inaugural International Family and Scientific Conference – Tanja reached out to offer her services.