It's a rare disorder that affects her balance. It starts in the fingers and toes and eventually makes it's way to the heart, shortening life span.
Anna organized a charity masquerade ball to create awareness and raise money to find a cure.
That's when businesses got in on the cause. The Woodridge Golf Course donated a banquet room. Pepsi donated drinks and DaVinci's catered the event free of charge.
The 300 tickets they had sold out in 10 days.
And perhaps the biggest show of support came from her classmates. Anna can't wear heels so all the girls had fancy flats.
For her it's about helping the others suffering from the disease.
"I wanted to raise money because it's not just me. There's little kids out there suffering from this. There's no treatment or cure, so it's almost like you're stuck," says Anna.
But Anna is making a difference. Between ticket sales and donations Anna raised more than $22,000 to fund research for a cure.
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Teen Organizes Charity Ball Fundraiser to Fight Disease