How did you become involved with the chILD Foundation?
I am one of the original founders of the chILD Foundation. My wife and I along with 5 other families were asked to form the foundation for purpose of research and to help provide education and support for those families who are searching for answers about pediatric interstitial lung disease and their children’s health. Our son Gregory Alexander “Alex” Porta was diagnosed with ABCA3 two years after passing away just a few short months prior to his 8th birthday. The memory of our son and the feeling that we were part of a group of families that had gone through (some still going through) the same trials and tribulations of having son’s and daughter’s with a lung disease that no doctor could answer the many questions that we had let alone make a diagnoses. My wife and I felt like we could contribute to making a difference in someone else’s child’s life and comfort them with the feeling that there were other families that they could draw strength from, along with doctors who truly cared and were working toward the answers they were looking for.
What is your role on the board of directors?
Greg is currently active in the American Thoracic Society Public Advisory Roundtable and is our advocacy chair.