On 13 June 2026, I’ll be climbing Mount Snowdon as part of an AGR team challenge to raise funds for Action for BPAN.

In January 2023, our daughter Scarlett was diagnosed with BPAN - a rare and devastating neurological condition caused by a mutation in the WDR45 gene. BPAN is progressive and life‑limiting, and children like Scarlett may face seizures, developmental delays and, in time, 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, but as a family we are determined to do everything we can to help change what the future looks like for her, and for other children like her.

Through Action for BPAN, ground‑breaking gene therapy research at Great Ormond Street Hospital is already underway. This climb is being done to continue this research and their overall fundraising target of £2.3M in the hope that, one day, a cure can be found.

Every donation helps fund vital research and raise awareness.

Thank you so much for your support - every step counts.

#ActionForBPAN #StepUpForBPAN