LONDON GOLF CLUB NAMES ACTION FOR BPAN AS OFFICIAL CHARITY PARTNER
London Golf Club has unveiled Action for BPAN as its official charity partner for the coming year, continuing its commitment to supporting important causes within the community.
Action for BPAN exists to bring hope to families affected by Beta-propeller Protein-Associated Neurodegeneration (BPAN), a rare, life-limiting genetic condition that affects the body’s ability to recycle and clear waste from its cells. As the condition progresses, iron gradually builds up in the brain, leading to seizures, childhood dementia, Parkinson’s disease and a progressive loss of movement.
The partnership will see London Golf Club, its members and staff work together throughout the year to raise funds and awareness for the charity through a range of initiatives, including fundraising events and a dedicated charity golf day.
Action for BPAN was founded by Kelly Sayers and Nicole Harper after their daughters, Isabella and Emily, were diagnosed with the condition. Determined to change the future for their children and others affected by the disorder, they created the first UK charity dedicated to supporting families living with BPAN while accelerating research into potential treatments.
Stephen Follett, chief executive of London Golf Club, said: “Each year, our team selects a charity that we can support as a club, and we are very proud to be partnering with Action for BPAN.
“The work being done to support families and accelerate research into potential treatments is incredibly important, and we look forward to working with our members and staff to help raise both awareness and funds.”
Action for BPAN has already helped fund early gene therapy research at Great Ormond Street Hospital and University College London, generating momentum that has helped the research team secure further investment and accelerate progress.
The current phase of the programme, which runs until May 2027, focuses on treating BPAN in mice and laboratory-grown brain models. The charity’s next major milestone is progressing to human gene therapy trials, which aim to correct the disorder with a one-time treatment delivering a healthy copy of the faulty gene.
Nicole Harper, co-founder of Action for BPAN, said: “I love how this partnership began, with my daughter Isabella and me simply popping into London Golf Club for a chat. I was completely blown away by the kindness and compassion we were shown by the team. To see that initial connection grow into this incredible opportunity means the world to us!
“Kelly and I are especially grateful to the staff and members who voted for Action for BPAN. We’re really looking forward to spending more time at the club over the coming year, being part of events and getting to know everyone.
“This partnership will shine a light on BPAN while supporting the vital research that could transform the future for children and families living with this condition.”
Located in Ash, Kent, London Golf Club continues to support a range of charitable initiatives each year through the efforts of its members, staff and wider community.