Dahlia is one of less than 500 people in the world diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration). Children with BPAN have developmental delays, little to no speech, seizures, and make slow cognitive gains. When they reach adolescence or early adulthood they are faced with a devastating sudden onset of regression and develop progressive Parkinsonism, cognitive decline, and dementia. Most don't live past middle age.
BPAN is an ultra-rare disease, not funded by the government, nor invested in by drug companies. The FDA has not aided in any research for a cure. But there are groups doing research, due to grants being funded and awarded, and this was made possible by private donors and money raised by BPAN families. The chance for a cure for this devastating disease is why we ask for donations (that go directly to the NBIA Disorders Foundation).
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