Today marks a truly historic milestone — the XLP Research Trust turns 20.

Twenty years ago, this charity was born out of personal heartbreak and hope. After all four of my sons were diagnosed with XLP1 — a rare, life-threatening single gene defect — we faced the terrifying journey of bone marrow transplants (now more commonly known as stem cell transplants). It was during those early hospital days that a report from the Institute of Child Health (2004) suggested XLP1 might one day be treatable with gene therapy. Out of this the vision for the XLP Research Trust was born.

Today, we’re proud to share that this vision is becoming reality.

Thanks to the tireless work of researchers and institutions across the globe, a human gene therapy trial for XLP1 has now been approved in the UK and is set to begin in early 2026. Recruitment is now underway.

This is a major leap forward. Gene therapy offers critical advantages over bone marrow transplants:

No need for a donor — patients use their own cells.

Eliminates the risk of Graft vs Host Disease (GVHD), which has affected all our sons.

Requires a less intense chemotherapy regimen.

This breakthrough is a testament to what a small, determined community can achieve. But our work is far from over. We remain committed to supporting families affected by XLP, advancing this trial, and working towards global access to this treatment.

To everyone who has walked this road with us — thank you. Your support has made this possible.

Here’s to the next decade of progress, compassion, and hope.

David & Allison