Action for BPAN

About Action for BPAN

Action for BPAN is the UK’s first charity dedicated to supporting those affected by BPAN (Beta-Propeller Protein-Associated Neurodegeneration), a rare and devastating neurodegenerative disorder primarily impacting children. Founded by two mothers, Kelly Sayers and Nicole Harper, whose daughter’s Emily and Isabella have both been diagnosed with BPAN. What We Do: • Raise Awareness: BPAN is under-recognized, leading to delayed diagnoses and limited understanding. We aim to change this through campaigns, events, and collaboration with medical professionals to promote early detection and better care. • Fund Research: With no cure and limited treatment options, we fund pioneering research to uncover the mechanisms of BPAN, develop therapies, and ultimately find a cure. • Support Families: A BPAN diagnosis can be overwhelming. We provide resources, guidance, and a supportive community for families navigating this journey, fostering connections and reducing isolation. Why We Do It: BPAN causes developmental delays, seizures, and a progressive decline in motor and cognitive functions, placing immense strain on affected families. As a rare condition, BPAN is underfunded and under-researched, leaving families without adequate resources or hope. Action for BPAN exists to fill this gap. By raising awareness, we aim to shorten diagnosis times and improve care. By funding research, we contribute to global efforts to understand and treat BPAN. By supporting families, we offer a lifeline to those facing an uncertain future. Together, we’re working to create a world where children with BPAN have brighter futures and where families feel supported and empowered. For more information or to get involved, visit www.actionforbpan.com.

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