A Mission To Save All Kids With BPAN 

 

MORGAN'S STORY

Meet Morgan – she is the happiest, most lovable girl who has an ultra-rare progressive disease called BPAN that will eventually take her sweet life away too early. There are only 500 known cases in the entire world, and there is very little research being done. Our ultimate goal is to raise money to fund researchers to find a cure and a therapy for kids with BPAN.

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I’m hopeful that people will hear Morgan’s story and will contribute whatever they can to help us save our beautiful daughter.

Kelly Kozole, Morgan's Mother

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WHAT IS BPAN?

Beta-propeller protein-associated neurodegeneration (BPAN) is a genetic disorder that damages the nervous system. It is a progressive disease, which means that kids will eventually lose all the skills they’ve worked so hard to gain.

BPAN is caused by mutations in the gene WDR45, located on the X chromosome. Most affected individuals identified so far have been simplex cases, meaning they are the only person in their family to have the disease.
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