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Action for BPAN

Action for BPAN is a charity founded by two dedicated mothers whose lives were forever changed when their daughters were diagnosed with BPAN. Motivated by their love for their daughters and the lack of available treatments, they co-founded Action for BPAN with a mission to raise critical funds for research, support families affected by BPAN, and advocate for better awareness and care.

About Action for BPAN

Charity ID: 1210529
Charity Category:  Health & Disability Website:  https://www.actionforbpan.co.uk

Neurological conditions Rare diseases Health & Medical Advocacy, awareness & campaigning
Action for BPAN is a UK charity founded by two determined mothers, Nicole Harper and Kelly Sayers, after their daughters were diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration) — a rare and devastating neurological disorder. Children with BPAN often experience seizures, global developmental delays, loss of movement and motor skills, Parkinsonism, and early-onset dementia. There is currently no cure, and the condition worsens over time. United by a chance meeting in a global BPAN support group, Nicole and Kelly launched Action for BPAN to raise vital research funds, support families, and fight for better awareness and care. Thanks to Kelly’s incredible fundraising, over £100,000 has already been raised to kick-start the first stage of gene therapy research at Great Ormond Street Hospital, which began in 2024, a major step toward creating a cure. Driven by love and urgency, Action for BPAN is committed to changing the future for all children with BPAN. With your support, we believe a cure is within reach.

Your Impact

At Action for BPAN, we’re fighting for a future where no family faces BPAN alone and. BPAN (Beta-propeller Protein-Associated Neurodegeneration) is a devastating and ultra-rare neurological condition, Affecting roughly one in a million children. It causes severe developmental delays, seizures, mobility loss, and early-onset dementia. There is currently no cure. We are determined to change that future, Action for BPAN is the first UK-based charity dedicated to this condition. Every pound raised helps us push forward funding research, supporting families, and giving children with BPAN a fighting chance. We are a small charity with a big mission: to cure BPAN. With your help, we will.
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Action for BPAN

Action for BPAN

Action for BPAN is a charity founded by two dedicated mothers whose lives were forever changed when their daughters were …

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