Earlier this month I was able to travel to Washington D.C. with my sisters Nikki and Jenny as well as my brother Rick, to attend the Cystic Fibrosis Foundations’ National Volunteer Leadership Conference. It was such a wonderful experience. Most of my friends and family here know, that we have had a charity called Sal’s Pals that raises funds for the CF Foundation annually. My nephew Sal was diagnosed shortly after birth with this fatal orphan disease that only affects about 70,000 people worldwide. While Sal is fairly healthy for an 11 year old child with CF, we were starting to see decline in his lung function. He also has the most common form of the disease which is also the most devastating. I can’t tell you how often I think of what would happen if we fail to find a cure or a medication that increases Sal’s quality of life or life expectancy. It is weekly, sometimes daily. Each time I get a missed phone call with no voicemail from my family, I panic. It breaks my heart to think of what my sister’s family goes through. I ache thinking of what Sal is experiencing as he grows older and his awareness and understanding of the disease grows too, not to mention what he has to do simply to breathe and live each and every day. His arsenal of meds he takes, his breathing treatments. The unfairness I’m sure he feels, that other kids don’t have to deal with this daily. I can’t fathom what that feels like, and I won’t pretend to. For the very first time in the 11 1/2 years that Sal has been alive, I HAVE HOPE! I don’t think that I can accurately explain just what that means. I have always worked hard to raise awareness and raise funds and volunteer, but I’ve always had that feeling in my gut, that he might not make it to see a cure. That, even if I lived 100 years, we may not see a cure. We get closer and closer, that life expectancy creeps up and up (it’s now up to 37 years of age...how old are you?). But somehow, some days, it doesn’t seem to come fast enough for me to feel hopeful. Those days are OVER. This conference and it’s leaders explanations and education about research being done, and the new “blue pill” Kalydeco, have given me faith that is unshakable. I truly believe that in the next 15 years, Sal and all those with CF will be able to and be taking Kalydeco and his lung function will be normal. In fact if all goes well with phase 2/3 of the trial for his type of CF, he should be taking it within a year! He will still be able to breathe. He won’t have that typical 2% decline in lung function every year, resulting in multiple infections, hospitalizations, lung transplants, or death. Kalydeco is such a huge and important drug that Forbes named it the most important drug of 2012. It brings huge hope to not only those with CF, but those with other orphan diseases that a cure and life saving medications can be found. Any genetic diseases, it gives hope. It directly effects the underlying cause of CF. To me this is simply amazing. I believe Kalydeco is a miracle drug and I think it has us very close to a cure for CF. I don’t know if you realize just how exciting this is, and it is, but we can’t stop now. This drug and research was developed because of people like those that are apart of Sal’s Pals, those people that attend our events, the people apart of the CFF foundation, all of it’s supporters and every cent given to the charity. We don’t have money hungry drug companies who are jumping at the chance to find a new drug for us, the 70,000 people with CF, Sal, aren’t worth it to them. Not worth the time or money or effort of developing life saving meds because it’s not profitable enough for them. I’ve realized it is up to me and others who raise and donate money to make a cure possible. We have come so very far, but we aren’t there yet. We can’t give up yet. There is still the other 96% of those with CF who cannot benefit from the drug yet. We had the chance to sit and chat with a woman by the name of Mary G. Weiss, one of the starters of the CFF. She had three boys decades ago with CF (her story goes that her little boy overheard her discussing the CF foundation and he thought she was working for 65 Roses). She is such a funny and inspiring woman. All of her children died of CF, but here she is at the conference, still fighting for them! All I can say is beautiful, she is a beautiful soul. For my friends and family reading this, for all of our passionate supporters and donors, I thank you with all of my heart and soul, for all you have done. I also urge you, keep standing with us, keep fighting for Sal and the others with CF. Because not only are we making history, but we are saving lives. As a beautiful fighter of CF says... LIVE, LOVE, BREATHE ♥ Maria ">http://www.youtube.com/tellyawards?x=4ao-LXVEHpk.