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Jenny Wildvank

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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).

 

Please donate, please share, please follow along. Thank you!

Money raised for BPAN research to date:

$25,596.71

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