On April 21, 2011, Carly was diagnosed with Progeria at 10 months of age. At the time, Carly was the 80th known child living with Progeria in the world. Today, Carly is one of 124 identified children and experts estimate there are a total of about 300.
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.
Remarkably, Carly is one of two children in the greater Toledo area with Progeria. To maximize our impact on the lives of these children and others, in 2013, Carly Cares, a Toledo-based 501(c)(3) non-profit corporation was formed to support families and research of rare diseases, including Progeria.
Carly Cares’ mission is to benefit children with rare genetic diseases, including Hutchinson-Gilford Progeria. Our focus is on raising funds to support Progeria related research. Examples of Carly Cares’ funding activities are listed on the page entitled Donate.
Carly Cares is supported by many volunteers, known as Team Carly-Q. Team Carly-Q includes people who donate their time, money, or products to Carly Cares’ fundraising events. You are an amazing group of people with tremendous heart and we are proud to call you Team Carly-Q.
Heather Unsinger Kudzia is the President of Carly Cares. Heather is a digital media executive at Triad Retail Media. She lives on her family farm in Swanton, Ohio with her daughter, Carly. Carly was diagnosed with the rare disease progeria at 10 months of age.
Greg Johnson is a Director and Medical Advisor to Carly Cares. He is currently a VP at IRI where his focus is on machine learning and predictive modeling for applications in areas such as genomics and molecular systems biology.
Carrie Johnson is a Director of Carly Cares Corp. Carrie is an intellectual property attorney and partner in the law firm MacMillan, Sobanski & Todd, LLC in Toledo, Ohio. She lives in Sylvania, Ohio with her husband and two daughters.
Natalie Decker is a Director of Carly Cares Corp. Natalie has been a nurse for over 25 years and is currently the clinical manager for a large pediatric practice in Toledo. She lives in Pemberville with her husband and has 3 awesome kids.
Kelli Keener is a Director of Carly Cares Corp. Kelli is currently a working inpatient psychiatry nurse at Flower Hospital in Sylvania, OH. She lives in Swanton, OH and has 2 daughters.