German-British family takes up the fight with BPAN

Kelly Sayers and Oliver Feiler are parents of two children: Max (8 years) and Emily (5 years). The family lives near London, England. 1 ½ years ago, they received the devastating news that Emily had BPAN. BPAN (beta propeller protein-associated neurogeneration) is currently the most common variant of NBIA (neurodegeneration with iron storage in the brain), accounting for around 40% of all diagnoses.

"After initial difficulties in dealing with the diagnosis, two weeks ago we started collecting donations and introducing this very rare disease to a wider audience," says Oliver Feiler. The family is working closely with 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 in NBIA.

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

But they don't want to stop there, they want to organize several fundraising events every year to constantly collect more donations for research into the disease and work towards a therapy. Ideas include climbing the three highest mountains in the UK and various marathons for BPAN. The family also has good contacts with celebrities from sport and society who can act as multipliers for their cause.

Kelly and Oliver have already achieved one success in this respect. The BBC will produce a short report about Emily and BPAN and broadcast it nationally. Previous similar programs have helped to generate significant donations.