Category: They wrote about us

Lenka and Radoslav Hajgajda founded the Association of Gene Therapy after the birth of their son Oliver, who was diagnosed with Angelman Syndrome. Since 2018, this non-profit organization has primarily been involved in supporting the basic research of the Czech Centre for Phenogenomics, focusing on the treatment of rare diseases. Today, on February 15th, we also commemorate International Angelman Syndrome Day.

A frequently mentioned term in this field is mouse models, which help uncover the causes of human diseases and enable the testing of new therapeutic approaches.

The main inspiration for establishing the Association of Gene Therapy (ASGENT) was your son Oliver, who was diagnosed with Angelman Syndrome. How challenging was it to start with the mission of your organization, which is to connect the worlds of science, medicine, and patients?

At the very beginning, support from a patient family initiative seemed like science fiction to us. However, my husband came up with this idea very early on, shortly after our son’s diagnosis. One thing that helped us at that time was a dark humor. We tried to take things as they were and stay above them as much as possible. One evening, we came up with a joke: “What would be the ideal gift for a boy with Angelman Syndrome?” “Well, a mouse with Angelman Syndrome, of course,” my husband replied, unwittingly foreshadowing the mouse model that scientists at the Czech Centre for Phenogenomics are now studying to help people with rare diseases.

Radoslav, my husband, initially contacted the Czech Academy of Sciences, through which we eventually reached the Czech Centre for Phenogenomics (CCP). During our meeting, the head of CCP, Radislav Sedláček, informed us that we were a welcome assistance. According to his words, we were the first patient family to decide to support basic research, and the popularization of science and research in the Czech Republic lags behind, and we, as close relatives of a patient, can help in this regard. The idea of basic research is often elusive to the general public because its practical application is possible only in the future.

You can read whole interview here: zde.

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.

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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.