Celebrate in Finding a Cure

It never ceases to amaze me the people that I have been able to meet through Sal's Pals. Even more moving is their generosity and their selfless acts of kindness. This past August Rick, the kids and I, had the privilege of attending a milestone birthday for Dyan. Dyan didn't want to celebrate her birthday with gifts or a fancy vacation get- away. Dyan wanted to celebrate her birthday helping to find a cure, all for a boy she had barely met. Rick and I were completely blown away by the Windom's thoughtfulness and generosity. Their random act of kindness continues to serve as an inspiration for us! I asked Dyan if she would be willing to write the blog this month. Graciously she accepted! Below is Dyan's story... This month I had the privilege to celebrate with an incredible family. I met the Pinardoʼs through a dance academy that our daughters attend together. I became friends with Jenny and was curious about Salʼs Pals and what it was all about. I had no idea what it was other than an email address to contact Jenny. When I looked further into it my heart just about burst. I had no idea that it was an organization to raise money and awareness for Cystic Fibrosis. I also, was not aware that it was started by the Pinardoʼs because their son suffered from the disease. The next time at dance I sat down next to Jenny and told her how encouraging her story and life was to me. Reading her blogs and seeing how far Salʼs Pals has come you couldnʼt help but want to be involved some how. How could I be involved was the question I asked myself? Here I was about to turn 40 years old. My husband was planning a birthday party for me. He said to me, “would you want to turn your birthday into a benefit for a charity?” The minute he said it my heart jumped. I knew exactly what I wanted to do. I have everything I could ever want in life. I have a great husband, three kids, a dog, and my health. What birthday present could ever top those things. I didnʼt need store bought cards or gifts taking up space so this really wasnʼt a hard decision at all. I wanted to dedicate my birthday party to raise money for Salʼs Pals. No gifts, or cards, just money given to a great cause to fight Cystic Fibrosis. When I called Jenny to ask her if that was ok she was really gracious and said, “are you sure you have everything in the whole wide world that you have ever wanted?” I said, yep, I have everything I have ever wanted. She then began to tell me more about her son Sal. The day after my birthday event was Salʼs 12th birthday. He will now qualify to try an experimental drug to help with his Cystic Fibrosis. I thought there is no way this was all a coincidence and it made me even more excited to have this birthday benefit for him. The party came and we had a blast. My very generous and giving family and friends gave over 700.00 dollars to help support Cystic Fibrosis. Jenny got up and spoke and everyone was moved by all she had to say. We sang happy birthday to Sal. This time when we sang... “and many more” it held a new meaning to me. I have had 40 years of good health and the ability to breath normally. Here was this very handsome, sweet, humble 12 year old kid whose life expectancy is 37. I had already passed that by 3 years. Itʼs not about the amount of dollars that was made or that it wasnʼt thousands and thousands of dollars. Itʼs about the support of wanting to see a cure be found. Every penny counts. My family is so blessed to know the Pinardoʼs and how they have raise money to help find a cure for Cystic Fibrosis. I pray that this new drug possibility for Sal will also be his cure. I hope and pray that on his 40th birthday I will be there to sing.... and many more!!!!! Though Iʼll be close to 70 I still want to be there. I believe that one day a cure will be found. Until then keep giving and supporting the scientific world in finding that one drug that will save lives. Thank you so much for letting us into your life. We walk along side of you and all the others that are impacted by Cystic Fibrosis Dyan Windom

A little Late but Great Article!

Kathy Gullette from St. Francis de Sales High School does a phenominal summary of our spring event. Attached is the recent article posted in the Knight Life. Thanks Kathy!

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

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.

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

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

Leaders Making a Difference

I have had my share of horrible bosses, no not quite like the movie but horrible in the sense that they were unable to gain the respect of the staff which ultimately always led to their down fall. Leadership and respect are earned not appointed. Anyone can be appointed into a leadership position but true leaders, effective leaders know that being a leader is far more than being qualified on paper. Leaders have a systemic way to guide their team and allow for feedback and continue to ever evolve, always changing, always growing. A couple of weeks ago I had the opportunity to speak with the junior high students at Sal's school about cystic fibrosis. The sixth, seventh and eighth grade students all gathered into the gym as Shelly and Mary Ellen from the Cystic Fibrosis Foundation explained what CF is to the children. Sal and I then explained what a typical day for him is. Sal showed the kids his vest and how he does his treatments. Surprisingly enough the kids had great questions and we left Sal to field them. One of Sal's peers asked, "What is the life expectancy of those with CF and don't you wish you didn't have it"? I looked at Sal and asked if he was okay to answer and he quickly looked extremely confident, as Sal often does, and nodded yes. Sal then looked out at the 150 plus students and teachers and replied, "The life expectancy for CF is 37...And no, you don't ever want to have CF but I wouldn't change it because of all the people we have been able to help". The look of panic on the children’s faces when they heard that the life expectancy was only 37 quickly turned to confusion when Sal exclaimed he would not change the fact that he has cf. As Sal's mother I couldn't help but get teary eyed at what I had just witnessed. Thankfully Shelly was there and began to explain to the kids what Sal meant by helping others and not changing his situation. Shelly explained Sal's Pals and talked about the money and awareness we have been able to create. The children began to cheer and the mood was quickly lifted as the kids realized there was hope for their friend. After we had shared with the kids all we could about cf I ended the program with this story. An old man walked up a beach littered with thousands of starfish, beached and dying after a storm. A young man was picking them up and flinging them back into the ocean. "Why do you even bother", the old man scoffed, "You’re not saving enough to make a difference". The young man picked up another starfish and sent it spinning back into the ocean. "Made a difference to that one", he said. After the story I continued to tell the kids that I realized that as parents we treat them like children but the reality is, they are. But it doesn't mean that they can't make a difference in the world they live in. Whether it be volunteering for a charity or performing a random act of kindness they can make a better place to live for themselves and others. I told the children that if they took one thing away from today’s presentation that it be, to go out and Make a Difference Every Day!

When we think of leaders we don't often think of children. But when I saw Sal up there in front of his peers answering questions no adult should answer, let alone an 11 year old I was amazed at his courage and strength. My little leader shined brightly! While I would love to take credit for Sal’s behavior I know that his courage and strength were fostered by other individuals who were intently listening in the crowd. We often forget when we send our children to school for over six hours a day that someone is leading them and guiding them. I am truly grateful that my children have had the opportunity to be surrounded by a group of educators that are dedicated to making a difference every day! Thanks especially to Mrs. Traver and the advisory group for inviting us to share our story. Our teachers lead by example and are dedicated to making our children better people and one day...our future leaders! Did I forget to mention...those future leaders raised over $1500 for cf in a weeks time, I think they are well on their way!