We are thrilled to launch our first fundraiser for Action for BPAN on 21st June 2025! Born from both grief and necessity, our charity is the first of its kind in the UK, dedicated to raising vital funds for research into treatments and a cure, supporting families living with BPAN, and being a strong voice for our girls and children like them.

Beta-propeller protein-associated neurodegeneration (BPAN) is a diagnosis we have both received for our daughters, Isabella and Emily. From that initial moment of devastation, we managed to find one another and, together, discover hope in what first felt like an utterly hopeless situation.

So, what is BPAN? BPAN is a rare and devastating condition that impacts every aspect of a child’s life. Its symptoms are heart-breaking: as iron builds up in their brains, children with BPAN often lose their ability to walk, talk, and move. They endure complex, prolonged seizures, severe motor difficulties, and cognitive decline. As the condition progresses, they also develop symptoms of Dementia and Parkinson’s disease—illnesses typically associated with old age.

Watching our daughters, and other children like them, face these challenges at an age when they should be playing and carefree is truly devastating. It’s a future we simply refuse to accept.

Thanks to Kelly’s incredible fundraising efforts, over £100,000 has already been raised. This has helped fund the initial stages of ground breaking gene therapy research at Great Ormond Street Hospital. This pioneering work offers hope for a potential cure that could transform the lives of children like Isabella and Emily.

This is where we need your help. This year, we’re taking on our first major fundraising challenge: climbing Snowdon. This climb isn’t just for Isabella and Emily, but for every person and family affected by BPAN. It’s our chance to raise the vital funds needed for research and to spread awareness of this devastating condition.

This climb symbolizes our determination to never stop fighting—for our daughters, for every child with BPAN, and for every family who feels as lost and helpless as we once did.

But we can’t do it alone. We need your help. Together, we can make a difference. Together, we can give Isabella, Emily, and all BPAN children the future they deserve.

Please step up for BPAN and climb for a cure—because every step brings us closer to life-changing treatments. Whether you donate, share our story, or join us as a fundraiser on the climb, your support matters— every step counts.. #ActionForBPAN #StepUpForBPAN

Kelly Sayers & Nicole Harper

Co-founders of Action for BPAN & Mums of Emily and Isabella