On Friday, Sept.29, local nonprofit organization, Carly Cares, will hold the 7th Annual Carly’s Party – for the Cure! to benefit children with rare genetic diseases, including Hutchinson-Gilford Progeria.
Guests of Carly’s Party will enjoy local band, The Bridges throughout the evening. Carly’s Party will also feature silent auction items such as tickets to Disney World, autographed Cleveland Cavaliers memorabilia, vacation rentals, a mountain bike, and tickets to sporting events.
The event will be held at The Pinnacle at 1772 Indian Wood Circle in Maumee. It will run from 7-11 p.m.
Progeria is a very rare, fatal, genetic condition characterized by accelerated aging. Although kids with Progeria are born looking healthy, by the first few months of age they begin to display signs of growth failure, loss of body fat and hair, aged skin, stiffness of joints, hip dislocation, and atherosclerosis /cardiovascular disease.
All children with Progeria die of the same heart disease that affects millions of normal aging adults (arteriosclerosis), but instead of occurring at 60 or 70 years of age, these children may suffer strokes and heart attacks even before age 10.
Since Carly Cares was formed in 2013, the organization has been devoted to raising funds to support children with rare genetic diseases and their families.
“Children with Progeria periodically need to travel for medical treatment and surgery. This means that parents often have to take off work and incur travel and lodging expenses- adding a financial burden to a stressful time,” said Carly Cares board member Carrie Johnson. “Thanks to the generosity of our donors, this year we were able to offer grants to families who need to travel for medical issues. The families have responded with overwhelming appreciation and gratitude!”
Another focus of Carly Cares is to fund research for rare genetic diseases, with a focus on Progeria. “Carly Cares, in partnership with The Progeria Research Foundation, has funded two medical research grants thanks to our generous donors totaling $175,000 and we hope to raise enough to fund another researcher this year. We are considering six exciting research grant proposals for potential funding this year,” explained Carly Cares Board member Greg Johnson.
“It’s hard to believe that Carly is 7, and that we are in our 7th year of Carly’s Party – for the Cure!” said Heather Unsinger, Carly’s mother. “So much living, loving and growing has happened over the past 7 years. Together with our community, we’ve helped to fuel research & innovation, and most importantly, to really touch progeria families. It’s been an incredible ride so far, and we’ve got so much more to accomplish!”
Tickets for 7th Annual Carly’s Party – for the Cure! are available at carlycares.org/events. Sponsorship opportunities are available – for more information e-mail firstname.lastname@example.org. People can donate by visiting carlycares.org/donate.