Family, friends of local girl with rare genetic disorder host big party to help other families

Published: Sep. 26, 2017 at 4:27 PM EDT
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There are less than 150 children worldwide living with Progeria, also known as the rapid aging disease. Carly Kudzia of Whitehouse is one of them. Her family and friends get together every year for a big celebration to raise money for research and to help other children living with the disease.

It's called Carly's Party for the Cure. Carly Kudzia has no shortage of energy. We caught up with her on the playground at Lial Catholic School today, "I am 7, and I am in the second grade." As usual, she gave me a run for my money in our annual race, "I beat you again!"

Carly is one of only 17 children in the United States with Progeria, a rare genetic disorder that accelerates the aging process in children.

Heather Unsinger is her mom,"We lose our Progeria kids to heart disease and stroke just like the aging population. We don't have a cure but there are a lot of treatments to help keep the cardiovascular system as healthy as we can."

Carly is part of a treatment trial in Boston, she's now in the second phase of it, "We won't know if it is helping until the end of the trial because they have done baselines and they will go back and compare."

The trial wraps up next spring, and that research is critical. But Heather says so is getting Progeria families together for an annual camp, "We are doing whatever we can to fund research for a cure but we also have to hedge our bets a bit and balance that goal with right now and what we can do today for families to make an impact."

One of the ways the Carly Cares Charitable Foundation has done that is to cover travel expenses for families attending the Progeria Family Weekend at the Hole in the Wall Gang Camp in Connecticut. Carly and Heather are just home from camp, "My favorite thing was arts and crafts. I climbed the rock wall too and I did the zip line all by myself." Carly is not alone when it comes to her fight against Progeria. She has an entire army of family and friends on the front lines with her.

Carly's party for the Cure is this Friday night at The Pinnacle in Maumee. Doors open at 7. Tickets are $30 in advance and $35 at the door. Last year the event raised $100,000. The goal is to do that again this year.

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