I’m taking on this challenge to support one of the bravest and strongest ladies I know who, along with another mum, has set up a charity with an incredible cause - to find a cure and change the future for all those who are faced with a BPAN diagnosis. We met whilst we were both in a cloud of shared desperation and she has taken that devastation and turned it into something phenomenal - founded a charity with a clear aim of finding a cure for this devastating condition. Please help me support her and this charity which is giving hope and support to all those affected by this rare and terribly cruel condition.

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 Alzheimer's and Parkinson’s disease... illnesses typically associated with old age.

Action for BPAN are working with a world class research Team at UCL and Great Ormond Street hospital but sadly funding for rare disease is very hard to secure and it relies heavily on the support of friends and family of affected patients to keep going.

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 so much, every step counts.. #ActionForBPAN #StepUpForBPAN