They wrote about us on – Interview with Lenka Hajgajda, Association of Gene Therapy director, about supporting basic research on Angelman Syndrome.

One of the older articles. But it’s good to read it and find out how far we have come since then and how our thinking has changed or been reinforced.

How did you come to found your association, the Association of Gene Therapy?

Three and a half years ago, when our son was one year old, doctors diagnosed him with a rare genetic disorder, Angelman syndrome. We immediately started researching what we could do for him and what lay ahead for us. Among other things, we came across information that Angelman syndrome is a very interesting disease from a genetic perspective, and scientists predict a huge potential for a cure in the future. That caught our attention. It was a glimmer of hope in the distance. My husband became very interested in it and started studying the topic in depth. He then tried to reach out to Czech scientists and somehow stimulate research on this condition here in the Czech Republic. To our great surprise, he succeeded.

How did you manage to do that?

First, my husband spent a long time finding out who to approach. He eventually reached out to the Academy of Sciences, who directed him to the Czech Centre for Phenogenomics, where we connected with Associate Professor Sedláček via Professor Forejt. We met with him, and to our surprise, he was enthusiastic about the idea of patients themselves initiating basic research.

He explained to us that it would be a big benefit for them as well. Basic research is often misunderstood by many people, and examples like this help to raise public understanding. So, there was excitement on both sides. We agreed that they had the capacity and technical capabilities, and the topic fit into their portfolio.

All interview you will find here: zde.

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