German-British family takes up the fight with BPAN

Kelly Sayers and Oliver Feiler are the parents of two children: Max (8 years old) and Emily (5 years old). The family lives near London, England. 1 1/2 years ago, they received the shocking news that Emily had contracted BPAN. BPAN (beta-propeller protein-associated neurogeneration) is currently the most common variant of NBIA (neurodegeneration with iron storage in the brain), accounting for about 40% of all diagnoses.

"After initial difficulties in dealing with the diagnosis, we started collecting donations 2 weeks ago and introducing this very rare disease to a wider audience," says Oliver Feiler. The family works closely with the children's hospital Great-Ormond-Street Hospital (GOSH) in London and the scientist and physician Prof. Manju Kurian. She is one of the world's leading pediatric neurologists and an expert on NBIA.

Kelly Sayers and Oliver Feiler have recently started asking for support from their friends and professional networks. To this end, they have founded the fundraising campaign "Emily Feiler's Fight": https://www.justgiving.com/fundraising/emilyfeilersfight

But they don't want to leave it at that, but organize several fundraising events every year to constantly collect more donations for research into the disease and to work towards a therapy. Among the ideas is the ascent of the three highest mountains in Great Britain as well as various marathons for BPAN. The family also has good contacts with celebrities from sports and society, who can act as multipliers for their cause.

Kelly and Oliver have already achieved success in this regard. The BBC will produce a short report on Emily and BPAN and broadcast it nationwide. Previous similar broadcasts have been able to help generate significant donations.