Tuesday, March 26, 2013

Dance A Thon

Having a sister as a respiratory therapist, I’ve known what Cystic Fibrosis is for some time. However, I’ve never known anyone with the disease and even when I started at CK, I didn’t realize even then that I did. I was blown away to find out that this seemingly healthy kid, this life of the class who always greeted me with a smile and followed it with an excuse for his late work, had a life threatening disease. How could that be? From everything I knew about CF, Sal didn’t fit the bill. Then his most amazing CK ally, Mr. Wit, filled me in. He told me all about Sal’s life, his incredible family, and he told me about Sal’s Pals. It began to make total sense to me. The reason he and Giana are such phenomenal kids became blaringly obvious – they have a phenomenal family and support system. So, alright, this kid has my heart… and he knows it… probably to a fault of mine… G too. I have three kids of my own and would do anything for them, so I understand Rick and Jenny’s desire to fight for Sal, but the magnitude with which they have decided to take on this fight is awe inspiring. My husband, Pete and I have always tithed gifts of gratitude for our healthy children. We feel it is the least we can do for those who are not, so it felt natural when the opportunity arose to step up and help at a greater level with someone we knew. I felt compelled to help, do something more for someone in our own community. That was where the idea for the CF Presentation and Dance-A-Thon came along. Do you remember your middle school dances? This thing could have been a total bust. I was terrified that my first effort for Sal’s Pals was going to be 150 wallflowers rolling their eyes for 90 minutes, while I panicked. So what did I do to ensure that didn’t happen? I called out the other clumsy middle school teacher and we had a Dance-off in front of those 150 kids. If that wouldn’t lighten the mood, nothing would. (I pre-practiced with Giana’s class, but Miss Schoettley does not need to know that!) What happened from there was just fantastic - a sea of orange clothes, orange bracelets, and sweaty heads all dancing for their friend – dancing for Sal. In the end, they raised over $1500 in one week and more importantly, raised awareness for CF to the Christ the King community. I was so proud of Sal and all the kids for what they were able to do during that week. By the way, I definitely won the dance-off. So the short version goes like this…. There’s this boy in my class, he drives me nuts. Then he smiles like a used car salesman, and it generally works. One day, he gives me a sales pitch about this dinner and I am hooked. I’m in, Sal, I am committed. We are committed. We will work with your mom and dad until there is a cure. Mrs. Traver

Monday, March 18, 2013

People vs. Things

People vs Things If you’re reading this you most likely know many facts about Cystic Fibrosis. You know that at any given time there are 30,000 children and young adults in the U.S. living with this as yet incurable decease. You know that in 1980 the life expectancy of a person with CF was 14 years, in 1990 - 18 years, in 2009 -35 years and today that number is into the late 30’s. This giant leap in life expectancy for CF patients is a direct result of the CF Foundations activities. Their award winning business model has gained more than anyone could have expected in the area of scientific research for finding a cure for CF. Through the years the foundations effort has methodically added years to patients’ lives with the development of treatments and medications. Just recently break through medications have been developed and are in trial that dramatically effect some CF patient in a positive way and the scientific method of reaching the goal of finding a cure is well planned for several years to come. Dr. Richard Simon, Internal Medicine and Pulmonary Disease at The University of Michigan has been with CF for 37 years. At a recent CF function he said this “When I first started working with CF I knew there was a light at the end of the tunnel, I just couldn’t see it. Now I can”. This statement implies that one of the best CF Doctors in the world believes that a cure will one day be found for CF. Will it happen in my life time or yours? No one can say for sure, but before it can happen, we must believe it will and work toward that end. SalsPals Believes!! WE WILL: Never surrender. Climb as high as we need, not wait for the mountain. Work harder on ourselves than on our task. Do this together. What will history say about us? Will it be “What were these people doing? OR How did they do what they did? Let’s work as hard as we can to reach the light at the end of the tunnel so people ask “How did they do it”. Until There's a Cure, Terry Jiannuzzi