Fewer than twenty people have been reported with this condition worldwide. That number is the whole problem. It is too small to interest a pharmaceutical company, and large enough that the science is entirely doable.
What stands between these children and a therapy is not scientific impossibility. It is a modest sum of money for experiments that nobody else will pay for.
Where the money goes
| What your donation funds | Why it matters |
|---|---|
| Mechanistic studies on patient cells | The unfunded first step — everything else depends on it |
| Fibroblast and iPSC development | Extending the work to a second patient background |
| Transcriptomics and proteomics | Finding which cellular pathways are disrupted |
| Neuronal models | Testing in the cell type that is actually affected |
| Drug repurposing screen | Testing compounds that are already approved for people |
| Patient registry and natural history | The baseline any future therapy will be measured against |
How to give
The quickest way to give is the Foundation’s public fundraiser on pomagam.pl. It is run by the Foundation itself, and the money goes to the research programme described on this site — the path towards a therapy for children with FBXO28, an ASO or gene therapy depending on the disease mechanism.
FBXO28 RESEARCH FOUNDATION
Registered in Poland · KRS 0001261586 · NIP 8121931960 · REGON 545569270
Entered in the National Court Register on 25 August 2026 · Supervising authority: Minister of Health
Registered office: Głowaczów, Mazowieckie Voivodeship, Poland · contact@fbxo28.org
To give by direct bank transfer, write to contact@fbxo28.org and we will send the Foundation’s bank details — account holder, IBAN and SWIFT/BIC. Funders who need them for a disbursement can ask in the same way.
Tax relief for donors
Under Polish law, donations made for public-benefit purposes are deductible up to 6% of an individual donor’s annual income and up to 10% of a company’s income. This relief does not depend on OPP status and applies to the Foundation now.
The Foundation does not hold public-benefit organisation (OPP) status and so cannot receive the 1.5% tax designation. Polish law requires two years of activity before OPP status can be applied for, and the Foundation was registered on 25 August 2026. We are not tax advisers — please confirm your own position with yours.
Corporate donors receive a donation confirmation naming the Foundation and the donor, because payment-gateway statements often show only the processor’s name.
Other ways to help
If you work in a laboratory, a clinic or a company that could contribute expertise, materials or services rather than money, that is often worth more than a donation. Write to us and say what you can do.