Tonight is the 2nd. Annual Carly's Party for the Cure at The Pinnacle in Maumee. The event is to raise money for Progeria research.
The hostess for the party is 2 year old Carly Kudzia from Whitehouse. Carly was diagnosed with age altering disease known as Progeria in April 2011. Her condition is extremely rare, in fact Carly is 1 of only 18 known cases in the U.S. and the second in the Toledo area.
After Carly's diagnois last year, the Kudzia family joined the Ohio Chapter for Progeria Research as Team Carly-Q. Carly's first party for the Cure raise $26,000 for Progeria research. All funds raised tonight go directly to the Progeria Research Foundation. Through the efforts of PRF each child affected with Progeria, including Carly, may participate in the third clinical trial expected to happen this year. The trial will introduce a new drug called Rapamycin which has been shown to reduce the progeria-causing protein by 50%.
"We are so encouraged and hopeful about this new drug. We are anxious for FDA approval, and fully expect the trial to happen before the end of the year. We look forward to beginning Carly's treatment at Boston Children's Hospital upon its approval," says Heather Kudzia, Carly's mother and Vice President of the Ohio Chapter of the Progeria Research Foundation. The trial cost is estimated at nearly $5 million and Team Carly-Q hopes to make a big contribution to that amount through Carly's Party.
Tickets for the party are $25 and will feature music and a silent auction. The party is a 21 and over event and more information can be found at www.teamcarlyq.com.
There is good news coming from new research just recently released. Results of the first clinical drug trial for children with Progeria, has shown successfulness with a farnesyltransferase inhibitor, a drug first used to treat cancer. For more on this new research click here.
On a personal note, Carly and her family joined us on WNWO Today a little more than a week ago. Carly is quite the little trooper and warmed all of our hearts.