On 13th June 2026, a team from AGR will be climbing Mount Snowdon to support Action for BPAN, a UK charity funding research into treatments and a cure for BPAN, while supporting families living with this rare condition.

This challenge is particularly close to our hearts.

In January 2023, our colleague Louise van der Valk’s daughter, Scarlett, was diagnosed with Beta‑propeller Protein‑Associated Neurodegeneration (BPAN) - a rare, progressive and life‑limiting neurological condition. BPAN can cause seizures, developmental delays and significant motor difficulties and, over time - typically in late adolescence or early adulthood - leads to symptoms similar to Parkinson’s disease and dementia. There is currently no cure.

Scarlett is now five years old - happy, cheeky and full of personality. BPAN is unpredictable, and the future remains uncertain. What is certain is the determination of Scarlett’s family, and the wider AGR team, to do everything possible to help change that future.

Thanks to Action for BPAN, ground‑breaking gene therapy research at Great Ormond Street Hospital is already underway, offering real hope for children like Scarlett.

This climb is our way of stepping up - to raise awareness, fund vital research and stand alongside every family affected by BPAN. Every donation, share and step makes a difference.

We’re stepping up for Scarlett.

We’re stepping up for BPAN.

And we’re climbing in hope of a better future.

#ActionForBPAN #StepUpForBPAN