Sydney Faith Denton is one of less than 100 people in the entire world that has been diagnosed with BPAN. BPAN (Beta-Propeller Protein-Associated Neurodegeneration) is a extremely rare type of NBIA (Neurodegeneration Brain Iron Accumulation). Children with BPAN typically have developmental delay, speech impairment, seizures, and make slow cognitive gains. When they reach early adulthood they are faced with a devastating sudden onset of regression and develop progressive Parkinsonism, cognitive decline, and dementia. They will lose everything they have worked so hard to gain!
Since BPAN is such a rare disease it is not given any governent funding for research! ALL BPAN RESEARCH IS COMPLETELY FUNDED BY PRIVATE DONERS AND FUNDRAISING EFFORTS MADE BY BPAN FAMILIES. It is imperative that we raise awareness and get researchers the funds they need in order to continue to search for treatments, and hopefully eventually a cure!