About BPAN and why we are fundraising

BPAN (Beta-Propeller Protein-Associated Neurodegeneration) is an ultra-rare, progressive and life-limiting genetic condition. Children with BPAN develop severe disabilities, and as the condition progresses can experience devastating symptoms more commonly associated with later life, including dementia, Parkinsonism and the loss of speech and movement. There is currently no cure.

This cause is incredibly personal to our Gala organiser, Louise van der Valk, whose five-year-old daughter Scarlett was diagnosed with BPAN in 2023. Since Scarlett's diagnosis, Louise and her family have been committed to raising awareness and supporting research that could change the future for Scarlett and other children living with BPAN.

There is hope through research

Researchers at Great Ormond Street Hospital and UCL are advancing a potential gene therapy for BPAN. Action for BPAN has set an ambitious target to raise £2.3 million by May 2027, helping to accelerate this research towards human clinical trials and, ultimately, the treatment families are desperately hoping for.

The Action for BPAN Charity Gala

On Thursday 5 November 2026, the Action for BPAN Charity Gala Dinner will bring together supporters from across the insurance market and wider business community at One Moorgate Place in London, with one shared goal: to help bring potential treatments for BPAN closer to reality.

As part of the evening, we will be holding a special Pledge Drive, giving guests the opportunity to directly support this vital research. If you're not attending the Gala, you can still make a pledge through this page and be part of our fundraising effort.

What your pledge could help make possible

£100

Could help provide essential laboratory materials researchers need to carry out gene therapy experiments.

£250

Could help fund a brain scan to track BPAN progression over time and assess whether gene therapy can make a difference.

£500

Could help researchers analyse patient samples to identify biomarkers that can track BPAN following gene therapy.

£1,000

Could help keep researchers' "brains in a dish" laboratory model in culture for one month while they test the gene therapy.

£3,500

Could help towards the clinical trial application to the MHRA, the UK's regulatory body.

These examples illustrate how donations can support BPAN research. Donations are not restricted to the individual examples above. All funds raised through the Gala Pledge Drive will support the wider programme of work to accelerate BPAN gene therapy research and help move us closer towards human clinical trials.

Every pledge matters

You don't need to give one of the amounts above. Every donation, whatever the size, helps move this research forward.

Together, we're aiming to raise £2.3 million by May 2027 and give children like Scarlett something their families desperately need: hope for a different future.

Thank you for being part of it. ❤️