Friday, April 12, 2013

Keep The Fight...

So here we are one day away from the Big Event! I took some vacation time to help with the last minute touches. But I still can't help but laugh at the vacation part. I hear vacation and I think tropical...not 38 degrees and work 18 hour days! It's not just me either; my committee has been here night after night helping as well. I have had many outsiders over the years ask why we do this. To be quite honest as I look around my messy house, the laundry piling up and my bed that hasn't been made all week, some times, for a second... I wonder the same thing. Then I remember this... About 65 Roses® "65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses." Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation. 65 Roses® is a registered trademark of the Cystic Fibrosis Foundation. Last month I had the pleasure of meeting Mary. As I sat listening to a speaker at The CF Volunteer Leadership Conference I looked over and I thought I recognized the women sitting next to my husband. I scribbled on a piece of paper to my husband to not let her get up. Very puzzled, Rick nodded. After the speaker, I quickly jumped up and introduced myself to Mary. As I attempted to thank her for all she had done I completely lost it and started to sob. Poor Mary must have thought I was a mess so she leaned over and gave me a big hug and a kiss. Once I gathered myself together I began to tell her had she not have done what she did all those years ago my Son may not be alive today. Mary smiled and said, "Honey you are a mom first and you do what you can for your children and if everyone would do what you and your family does we would have this Damn think beat by now"! Her charisma and passion were contagious a truly inspiring women. Mary had no drug companies, no gene discovered but she had hope! Even more remarkable she still has hope and she still continues the fight after all these years. So if I learned anything from Mary it is, to beat this thing we need to do our part! And that means not sweating the small stuff. So for now I will make the coffee a little stronger and the laundry is gonna pile up for a few more days. We've got money to raise! Until there's a cure, Jenny

Monday, April 8, 2013

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 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 ">