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“I won’t give up if you don’t give up!”
The mission of Carly Cares is to benefit children with rare genetic diseases, including Hutchinson-Gilford Progeria. Its focus is on raising funds to support Progeria related research. While Carly Cares is not directly affiliated with The Progeria Research Foundation, we donate a significant amount of our funds to that foundation each year. In addition, Carly Cares is dedicated to supporting the local Progeria community in the Ohio area through other mission related activities such as non-medical family support, funding and educating local researchers, and raising awareness.
The Progeria Research Foundation [PRF] is in warp speed toward a cure! PRF was founded in 1999 by the parents and aunt of Sam, who had Progeria. PRF has gone from infancy to gene discovery/identification in 2003 to clinical trials beginning in 2007 and they are currently expanding their third drug trial to include up to 80 children… including Carly!
Carly and her new friend Zoey both traveled to Boston for their first treatment for Progeria at Boston Children’s Hospital in July 2013. Both were evaluated by a team of specialists and provided medicine that they will take to treat Progeria during the course of the trial. This medicine is not a cure, but it has been shown to improve some of the cardiovascular and bone effects of Progeria, as well as increase estimated lifespan. So, while this is great progress, there is still more work to be done and Carly Cares is determined to support that work in any way it can.
The Progeria Research Foundation is not only conducting this clinical trial, but issuing grants and tissue/cell samples around the world for top research teams to study and test on. The treatments on the horizon move us slowly and steadily toward a cure, however, with the additional research and expansion of the drug trial comes much increased cost. Please, if you can donate to our cause, we would appreciate it!
Today Carly is almost 5 years old, has fallen off the weight percentile chart, but is growing steadily in height and weight thanks to growth hormone injections and supplements, and the lonafarnib. She is smart as a whip, very funny and ALWAYS smiling.
This latest clinical trial expansion is estimated to cost over $3 million. In addition, local researchers and families have other needs and challenges that Carly Cares is devoted to supporting. Please donate today.
Thank you so very much!
Heather Kudzia and Carly Cares Corp