BPAN stands for Beta-Propeller Protein-Associated Neurodegeneration. BPAN is caused by mutations in the gene WDR45 which is located on the X chromosome. The majority of the people who have BPAN are females - the mutation is lethal for most males before birth, however, there are a few males living with BPAN. People with BPAN are developmentally delayed with slow motor and cognitive gains. Typically they are also non-verbal and develop little to no words. Seizures and sleep disorders are typically common with the disorder. During adolescence or adulthood, affected individuals experience a relatively sudden onset of progressive dystonia-parkinsonism and cognitive decline and they cannot regain skills once they have lost them. The average life span varies for individuals with BPAN, but due to improvements in medical care, more affected individuals are living well into middle age.
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This disorder was only discovered in 2012, and currently, there is no treatment for this disorder. There are doctors and researchers that are currently trying to understand BPAN and they need the money to keep funding their research in hopes to find a treatment or even a cure for this disease. They rely on donations from organizations, corporations, and fundraisers to keep their research going because they do not receive any US Government funding. This is why we want to raise money for BPAN Research. Thank you for your Support