By Tim Jimenez

PHILADELPHIA (CBS) — Penn Medicine and Children’s Hospital of Philadelphia received a $3.25 million dollar gift to establish a center dedicated to a degenerative disease affecting one in every 50,000 people in the world.

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FARA, the Friedreich’s Ataxia Research Alliance, is giving Penn and CHOP this money to establish a Center of Excellence, helping those like Grace Haupt.

“I’m a sixth grader, I go to The Episcopal Academy and I love to read. Oh, and I have a progressive disease called Freidreich’s Ataxia,” Grace said.

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FA for short, the disease starts young, and most patients end up in a wheelchair in their mid to late 20s. So, these funds go towards boosting clinical trials and officials hope for a cure one day. Grace is hopeful it’s coming and she can stop being treated like the Queen of England.

“If I say get this, get that, everyone obliges. But being the Queen of England isn’t as glamorous as it sounds. I’d rather to be able to do it all myself,” she said.

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