Back in 2006 Rick and I were invited to attend the National Leadership Council Conference for the Cystic Fibrosis Foundation. It was one of the most amazing and inspiring things that I have ever been apart of. While at the conference we were asked to go out and speak with our State Representatives and Senators about legislation that would affect CF. Part of what we were lobbing for was the mandatory screening for all newborns to detect CF. Everyones hard work paid off because just nine months later the bill passed!
While we were at the 4 day conference there was a young couple that spoke to us about their two children who had CF. The couple spoke about their trials and tribulations in the fundraising world and how their outlook on life had been so dramatically changed after finding out that both of their children had CF. As both of them spoke you couldn't help but feel like you had known them forever.Their sheer genuineness and compassion for others was extremely moving and memorable. About a year later I received a phone call from The CF Foundation to tell me that Jena Cassalina had passed away at the age of 13. I remember thinking that there must have been some terrible accident because she was way to young to have passed away from CF. I quickly called Rick at work and his response was the same as mine. We both sat on the phone in silence and shocked. I guess when you hear life expectancy of 37 you forget it's just an average.
Margarete Cassalina, Jena's mom recently published a book about her families life with CF. The book has already won awards and received rave reviews. I just ordered my copy today and can't wait to read it! Even more exciting the book is being made into a movie that will start filming later this spring! Check out the website to find the book and you can see the A- List actors that they already enlisted for the movie.
www.margaretecassalina.com

Last week Sal and I went back to Eagle Point Elementary to talk about CF with the students to kick off their annual Penny Races fundraiser for CF. Usually Jeff (the principal) and I are the ones who do all the talking but this year Sal was the one who spoke to all of the kids. Jeff and I just sat back in amazement as we watched Sal speak to the kids in such a grown-up manner.One of the older kids asked the question, do you die from CF? Sal quickly looked over at me unsure of how to handle the question. I was prepared to answer and rattled off the life expectancy. I could see the 6Th graders trying to do the math in their heads as Sal just sat there cool as could be ready to answer the next question. The next kid asked Sal,Do you hate having CF? Jeff and I both looked at each other waiting to hear Sal's answer. I was really afraid Sal was going to say something like "no dude it sucks what are ya thinkin".Surprisingly enough Sal looked right at the boy and said, " no I don't mind having CF because I know that we are doing good things for CF and if I didn't have CF all of my family and friends wouldn't have Sal's Pals and we couldn't help cure CF". I think Jeff and I both had tears. I had never heard Sal say anything like this before. What a sacrifice this 8 year old was willing to make. The arsenal of questions continued to fire so I didn't have much time to really think about what Sal had said until later that night when I received another one of those phone calls. I couldn't help but feel like I had mislead all the kids with that average life expectancy that I had told them because the phone call was about a 19 year old that had passed away earlier in the day from CF. I was sad and angry all at the same time. These young people struggle enough with their disease and dying just shouldn't have to be something that they have to worry about. In the mist of planning for this years event this was a quick reality check about why we do what we do.I quickly remembered what Sal had told that class earlier in the day about not minding that he had CF. So our fight continues until we find a cure for this terrible disease not just for Sal but the 30,000 others like him.

My friend shared this video with me.
Eva is one of those people that even at the end of her life she is thinking of others. Her message is all about LOVE. Eva doesn't talk about material possessions or living in a big house or driving a fancy car. She talks about being loved and showing love. She goes on to talk about being blessed with tremendous family and friends. Eva is a true inspiration and we can all learn a lesson from her.