The FBXO28 Research Foundation was founded by Aleksandra Sułkowska-Bojarczyk, MD — first and foremost the mother of Klara, a child diagnosed with an ultra-rare FBXO28-related disorder.
Faced with the uncertainty that accompanies an ultra-rare diagnosis, Aleksandra and her husband Sergiusz made a family commitment to build an international network of scientists, clinicians and research partners dedicated to accelerating FBXO28 research and the development of future therapies.
Although Klara’s diagnosis was the catalyst for this work, the Foundation was created for the entire global FBXO28 community, with the goal of advancing research, fostering collaboration and helping bring effective therapies closer to patients.
Who runs the Foundation
Aleksandra Sułkowska-Bojarczyk, MD — Founder and Chair. Child and adolescent psychiatrist in training, working on neurodevelopmental disorders, psychiatric genetics and precision psychiatry. Leads the Foundation’s medical and scientific coordination.
Sergiusz Bojarczyk — Co-founder. Responsible for operations, technology and data governance.
How the Foundation works
The Foundation does not run a laboratory. It coordinates and co-funds an international research programme, and the laboratory work is carried out by established academic partners in Poland and abroad. That structure is deliberate: it puts the money directly into experiments at institutions that already have the equipment, the expertise and the ethical oversight, instead of into building a parallel one.
The Foundation’s own work is the part nobody else does: holding the programme together, finding the families, keeping the data usable, and raising the money for the steps that fall between existing grants.
Registration
FBXO28 RESEARCH FOUNDATION — a foundation registered in Poland on 25 August 2026 in the National Court Register (Krajowy Rejestr Sądowy), register of associations and foundations.
KRS 0001261586 · NIP 8121931960 · REGON 545569270
Registered office: Głowaczów, Mazowieckie Voivodeship, Poland. Supervising authority: the Minister of Health.
Management board: Aleksandra Sułkowska-Bojarczyk, MD — President of the Board (Prezes Zarządu), representing the Foundation individually.
The Foundation does not hold public-benefit organisation (OPP) status.
Financial reporting
The Foundation’s first financial year ends on 31 December 2026. The first financial and activity report will therefore be prepared in 2027 and published on this page. Until then there is nothing to report, and we would rather say so plainly than leave the section looking as though something is being withheld.
If something here is unclear, or you need a document we have not published — the statute, the KRS extract, or anything a funder asks for — write and we will send it.