The night of fun and dancing also served another important purpose – raising more than $40,000 to help pay for clinical drug trials and research to find a cure for the rare disease Progeria.
The fundraiser’s main attraction was Carly Kudzia, who has the rare, fatal genetic disease that causes her to age rapidly, roughly at a rate of about eight to 10 years for every calendar year. There are barely 100 children known to be living with Progeria in the world and their average life expectancy is about 13 years.
Carly’s father, Ryan Kudzia, is a journeyman pipefitter and has been a member of UA Local 50 since around 2000.
Carly was diagnosed with Progeria shortly after being born in 2011 when her pediatrician recognized something was not right. Since then, an “All-Star” team of physicians have become an extension of Carly’s family. But because the disease is so rare, there is no established treatment plan for patients like Carly.
And that makes events like “Carly’s Party for the Cure” so important. About 500 people attended the third annual event that included raffles and a silent auction in addition to the cash bar, entertainment and dancing. Like all other funds raised by the Kudzias, 100 percent goes to the Progeria Research Center in Boston, where Carly is part of a drug trial.
Ryan Kudzia said the support he has received from his friends and coworkers has been “amazing.”
“They come so strong, it’s unreal,” he said.
To learn more about Carly and the fundraising efforts to find a cure for Progeria, visit their website: www.teamcarlyq.com.