€1.8 million raised for Karolina — €180,000 from the goal

On 2 October 2024 the association announced that Slovenia had donated €1,821,528 for the development of gene therapy for Cockayne syndrome type B — leaving €180,000 of the €2 million needed to pay for the preclinical phase.

In the weeks before the announcement, the association’s charity relay for Karolina and a series of smaller actions had together raised more than €90,000. The campaign was run by the Viljem Julijan Association together with Karolina’s family and the musician Gregor Bezenšek Jr. – SoulGreg Artist.

What the money pays for

The €2 million target was never an arbitrary round number: it is what the preclinical phase of developing a gene therapy costs — the laboratory and animal work that has to be completed, and completed convincingly, before any regulator will consider a trial in children. That work is described on our gene therapy research page.

As the association put it at the time: through the funds donated for Karolina, there is hope also for other children with Cockayne syndrome type B — because a therapy developed for her fault in the ERCC6 gene is a therapy for the condition itself.

We are infinitely grateful for such incredible support, and for the fact that through the donated funds for Karolina there is hope also for other children with CSB.

— Dr. Nejc Jelen, PhD, President of the Viljem Julijan Association

What came next

Ten days later, on 12 October 2024, the association filled Cankarjev dom in Ljubljana for its annual charity concert for children with rare diseases. The campaign for Karolina closed five months after that, in March 2025, at €2,102,197.

Donations still support the research: see how to give.