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!

SPIRIT

Hard to believe the kids are already heading back to school and Sal is entering his third season of football. Our big event came and went and our tenth year was by far the best yet! No doubt, with each passing year our event grows deeper and our passion stronger.

Shortly after Sal's diagnosis and we decided to enter into the fundraising world, I read a book. The book was titled, The Spirit of Lo. The book was written by a husband and wife, Don and Terry Detrich, who had a child with cystic fibrosis. The book takes you on a journey in the life of a family dealing with chronic disease and all of the affects they have to deal with in addition to raising their young family. I, being a new mother of a child with CF, found extreme comfort that in the face of adversity the family still found time to raise money for The Cystic Fibrosis Foundation. Lo, their daughter with cystic fibrosis begins to fundraise herself and later becomes the poster child for cystic fibrosis in her native state of Oklahoma and throughout the country. After reading the book I could not help but be empowered and hopeful. So, I found Terry's contact information and asked her if she would come and be a guest speaker at our second annual event. My husband called me crazy, actually stalker might have been the term. But the book was so amazing that I wanted Terry to share her families’ journey with all of Sal's Pals. And she did. Terry flew in all the way from Oklahoma and told her journey to the more than 500 person crowd. At the end of her story everyone was standing with not a dry eye in the room. I don't think Terry understands how much her attending our event changed my life. Her kind words of wisdom and generosity all those years ago have not been forgotten. At that time Lo, her daughter, had been doing well and cystic fibrosis was defiantly not slowing her down! Over the years I have continued to read about their family and their continued success in the fundraising world.

It is with great sadness that I share with you the passing this week of Lo Detrich. Lo was 28 years old. Over the past few years Lo had suffered from two failed lung transplants and a kidney transplant. Terry recently wrote on Lo's Caringbridge page,

"it's the spirit that enables each of us to find the strength to do something we can't believe we can do by ourselves."

Terry defiantly instilled this spirit in her daughter and it was evident throughout her life. Terry also helped me to recognize this spirit when she attended our event all those years ago. For me this same spirit is evident in our family and our friends. In fact, I can't think of a better definition of what they have been to Rick and I.

Eight years after reading the book I finally understand the spirit . Thanks Terry for continuing to be a source of inspiration. And to Lo...May you forever breathe easy.

Until there's a cure,

Jenny

65 Red Roses

So, I'm not gonna lie. I've been up till 2 am everyday for the last couple of weeks. Between work, the event and day to day family stuff I've been beyond busy. To top it off I've have less than 36 hours to make it all happen before I board a plane and not to return until 48 hours before the biggest day of the year. As I sat and looked at my list getting bigger instead of smaller, (this is where the not lying part comes into effect)I felt for a brief few hours some mild anxiety... aka chest pain relieved with wine not nitro. As a reward to myself I thought that I would switch up the order and start from the bottom. On the bottom of my list read, "Watch cf documentary". The documentary was about a 23 year old Canadian girl who had cf. In 2010 I had watched Eva blog from her bedside as she waited for her 2nd double lung transplant. In watching her daily blog you could see how fast she was being overcome by cf but her spirit continued to fight. As the days went on it became extremely difficult for me to watch because I knew how it was going to end. Then one day one of my sisters called and shared the news that Eva had passed away. About a month ago that same sister got a phone call from a producer to see if she wanted to be a part of distributing Eva's movie. The producer was trying to get private viewings in the United States and started by contacting followers of the blog. Oprah Winfrey, decided to debut the movie on her new Own Network and it aired in the US tonight. So list in one hand and wine in the other I decided to be a rebel and check off my list from the bottom. The documentary takes you through Eva's journey as she waits for a lung transplant. As I began to view the first couple of minutes it was a quick reality check. I’m so inundated with my life around me that I forgot that, I can breathe easy. I don't cough when I take a deep breath and I don’t swallow 40 pills a day. Eva reminded me that life is not about the small stuff. At the end of the day we are left with family, friends and our health. I am fortunate to have all three. Somehow after watching the movie staying up past 2 am doesn't seem so bad. Thanks Eva for my reality check! See you all next week as we continue in our tenth year of fighting cystic fibrosis. Until there's a cure, Jenny http://65redroses.livejournal.com/

What's in a neighbor?

What the heck is a Blog?? Yep, I googled it after being asked by Jenny to be a guest blogger for the Sal's Pals blogspot. It's a web log, a way to reflect on life. Let's do that. I'm Ron Reeder, married to Lisa and we have 3 boys, ages 9, 6 and 2. Which is why I'm a little late getting this blog in! I grew up in East Toledo, moved to the Bahamas for a few years and came back to the "nickel" in the early 80's. Stay with me. I learned a game called soccer in the Bahamas, and after coming back to the states I continued to play whenever and wherever I could. In the 90's I played for a men's team in Oregon Ohio, which is where I met a friend that knew I was looking for a house. He suggested I come to West Toledo and look on his street, Stannard Drive. Dude, I'm an East Sider, West Toledo! I don't have any friends over there. Fast forward a few years and I ended buying a home on Stannard. It was the late 90's, and I loved all things Chicago, Bulls, Bears, Blackhawks and yes, even the Cubs. On a great summer night, we had the front door open, watching the Bulls just dominate the Jazz and we could hear this cheering from across the street. It was in tune to every big basket the Bulls made, turns out the new neighbors across the street like the Bulls too! The next day I met Rick and Jenny, and we became great friends. Actually, the next season we went to a Bulls vs. Spurs game in Chicago, but I will keep the details of that weekend getaway off the blog! We were young, just getting married, starting a family, it seems like yesterday. I can remember the excitement in Rick and Jenny, getting ready for the baby. Then with one phone call, your life changes. It was Rick, he told me that Sal had Cystic Fibrosis. I sat on the phone speechless as Rick talked with this sense of calm. I don't remember much of that call, but what I do remember is him saying, we gotta do something. Whatever it takes, I was all in. Sal's Pals started with a group of family and friends, all of us ready to do whatever we could. We all had different connections, different skill sets. We learned together how to make this charity what it is today. With Jenny and Rick leading us, providing vision, Sal's Pals has raised over half a million dollars! They are taking CF head on, by generating funds which buy science, and science is buying life. In 1959, the median age of survival of children with CF in the United States was 6 months. Now, it's 37.4 years! I have been fortunate to meet so many great people that are a part of Sal's Pals, all of whom are my friends. I have built relationships with many different sponsors of our events. One phone call and it's food, beverages, golf and more. All of them wishing us success at our fundraisers. I can't thank them enough! This past August, my family spent a week in the Outer Banks with Rick, Jenny, Giana and Sal. From sun to sand, pool to hot tub. Our kids played together, argued with each other (kids do that!) but we made some great memories. What started so long ago has led us to where we are now. I won't stop until there is a cure!

10 Years in the making...

Ten years ago I remember telling a friend that I didn't want to fundraise. I didn't want to talk about CF and I sure did not want to spend all of my free time fighting it. I was inundated with doctors appointments,feeding schedules and I felt like I was giving more medicines to my newborn baby then I did to my patients in the ICU. I was terrified about my families future and even more terrified that I had no control over my life. I felt as if I was under a microscope and everyone was watching. I could feel the sorrow in peoples eyes when they asked how Sal was doing and it broke my heart. Cystic Fibrosis felt like it was consuming my life and even when I tried to pretend everything was normal I felt worse. Well, four months went by after Sal's diagnosis and it seemed that the only thing that did make me feel like I had any control was learning all I could about cf. The fear of the unknown, that's what made me feel so terriable inside. Once I could accept our new reality and fully understand what it was that we were dealing with then, then I could move on. With the motivation of my sister Nikki and the support of our family and friends Sal's Pals was born! For the first time everything felt right. Sure, we had no idea what we were doing when we entered into the fundraising arena but what I did know was that it felt right. The microscope felt as if it had been lifted and the sorrow I once felt as people looked at my son turned into helping hands. Over the past ten years we have held our annual dinner and auction, wine tastings, corporate golf outings, motorcyle runs, school and corporate jeans days, taught science classes,St.Patty's Day bead selling events,cornhole tournamnets,girlscout rocking chair events, Sal's Pals at the Mud Hens,Casino trips, New York City Marathon, Tatoo Parties, Nascar races, radio Shows, Carnivals, Weddings, Parking Lot Party and newly added to the list is a RODEO event! If I would have had a crystal ball ten years ago and seen this list I'm pretty sure that would have been the end of me! Ten years wiser, I know now God doesn't give you more than you can handle. The continued success of the theraputic drug pipeline and the advancements in cystic fibrosis research that are "adding tommorrows everyday" for those afflicted with cystic fibrosis are improving my sons life that I was once was so uncertain about. Please join us for our 10th Annual Dinner and Auction as Sal's Pals continues in the fight against cystic fibrosis. The event will be held Saturday May 12th, 2012 at St. Francis High School.

I am thankful for...

cbsnews.com/video/watch/?id=7386952n I am thankful for all of the reachers, scientist,the cystic fibrosis foundation, nurses and doctors who have dedicated their lives in the fight against CF. The video clip above shows us how our fundraising dollars are at work, and people are literally breathing easier because of it! Until there's a cure, Jenny

What’s that saying? “Oh what a difference a day can make…” Well, how bout a decade? As we head into 2012, it’ll mark 10 years that I have had the honor to fight with Sal and his extended family, along side of hundreds of other dedicated souls to fight for a cure for CF.
I’ve been sitting here staring at a blank computer screen for an hour… thinking about how Sal and Sal’s Pals has impacted my life… and just how to put it into words. I read previous blog entries, and I mirror the sentiments written before me. I too began my fight against CF stemming from a long time friendship with Jenny and Rick. Jenny and I met at Christ the King, and have remained like sisters ever since. I always knew Jenny was strong. I’ve always admired her ability to make it through – no matter what the situation. She’s a rock. She’s funny. She’s passionate. She’s hardworking. She’s inspiring. All qualities that, from day 1, have enabled her to handle the fact that Sal has CF with such grace.
I met Rick when he and Jenny began dating in high school. We were all inseparable for many years… and when I would come home from college for the summer, Ginny Pinardo was kind enough to let me basically live at her house. Even back then, Rick was always the man in charge. He always had a plan and a “to-do” list. He was known to have The Book of Hoyle on hand to make sure we were playing (usually Euchre) by the rules. He was the man of the house at a young age… While we were lounging around his pool, he was up at the crack of dawn going to work. He always took care of us… and people always looked up to him. Whether he knew it or not, he took on this leading role with a sincere sense of humanity. He always welcomed people in, the more the merrier… And he always had a good time, no matter where we were or what we were doing. These too are qualities that I think still hold true to this day, and are very evident to all of us involved with Sal’s Pals.
Fast Forward to the day Sal was diagnosed: I remember slamming down my phone, rushing out my office door and speeding to the hospital and walking into the ICU – surveying the room. I remember feeling helpless. Not even knowing what CF was, I just knew it was bad. I heard that life expectancy was very young, and my mind couldn’t help but immediately think of unimaginable pain, and loss for my dear friends and their sweet baby boy. Rick and I went outside to take a walk, and I remember the heart-breaking conversation of a father’s hopes and dreams for his son… to grow up strong, healthy and happy, and to one day play football. It’s kind of ironic – because now, here we are 10 years later, and this blog site has a specific post of Sal in a football uniform… playing tackle football with his dad standing proud on the sidelines…
From that day on, Jenny and Rick have handled this situation true to character. Strong. Passionate. Inspiring. They made a plan. A plan to fight. A plan to raise money. A plan to give hope. They have made the ultimate “to-do” list, taken charge, worked hard; and because of their magnetic sprits have created a following of dedicated supporters. People who love Sal. People with will and drive and passion. People who have dedicated themselves to finding a cure for Sal and so many others. And in this journey of giving, I think I speak for all of us when I say that I have been given SO much more than I could’ve ever imagined. After the very first Sal’s Pals Dinner Auction we had at the Elks on Holland Sylvania Avenue… I remember I emailed Jenny and Rick thanking them for letting me be part of such a fun and inspiring event. I told them that Sal’s Pals had changed me. At the time that I wrote that email, I had no idea just how much we would all continue to be changed, and grow in this fight against CF.
The day after Memorial Day this year, I was summonsed to Jury Duty. I was there for a VERY LONG 8 hours praying I would get sent home… that is until I made a friend in a crowd of strangers… A woman who saw my orange Sal’s Pals bracelet and knows someone who comes to our events. By the end of our discussion, she gave me her email address so that I could let her know when the next event was going to be so that she and her husband can attend… The point is: We have expanded our footprint within the fight against CF. Now, almost 10 years later, people in our community know what Sal’s Pals is. Even if they’ve never been to an event, or even if they don’t know Sal. Every time this happens, I get excited and more motivated to keep pushing to create awareness and support for our cause.
The beauty of Sal’s Pals, in my opinion is that we started out a small “grass-roots” type operation, and have turned it into what is now: one of the largest fund raising groups for CF in the country. Over one-half a MILLION dollars raised – and counting! This money has gone to research for medications that by all reports have made significant strides in the battle to cure CF. These medications have improved the quality of life for those with CF. But most important, these developments have motivated us, as a group, to fight harder than ever to spread awareness, raise money, and find a cure. Our determination is steadfast. We will NOT ever stop working until we reach our goal.
For me personally, I have learned an important life lesson because of my involvement with Sal’s Pals: Asking for help is not a sign of weakness. In the beginning, I remember being apprehensive to ask people to donate to Sal’s Pals. But this process, and watching my fellow committee members in action have showed me that when you have passion, and want to do good in the world – people want to help. So, it’s not about asking for money… it’s about spreading that passion in order to create change. So, to all of you who have given your time, or your hard earned dollars – Thank you! Your contributions have not only helped the CF Foundation. Your generosity has opened my eyes and my heart to see the real good that lies within us as people.
Jenny and Rick: You are both truly two of the greatest people I have ever known… and I thank you for your friendship, your leadership, and your commitment to the CFF. Being a part of Sal’s Pals is one of the most meaningful experiences that I will ever have in my life. Sal: You are an inspiration. Getting a ring-side seat to watch you grow up has been a true joy in my life. You are so funny and resilient… and you make it easy for people to want to give. You are loved by so many!!!! It is because of you that we started this journey… and in doing so, countless lives have been impacted… and in the end, countless lives will be saved!

Until there’s a cure,
Erin Dzierwa

Tattoo Party to benefit Sal's Pals

Toledo Tattoo Company/Tattoo For A Cure
Saturday, August 13, 2011

Toledo Tattoo Company-
401 Superior
Rossford, OH

Toledo Tattoo Company would like to Invite you to our First EVER Tattooing for a Cure and open house at our NEW Rossford studio. All proceeds and donations go to Sal's Pals ( Cystic Fibrosis Foundation). Hope to See you there!!! Also, if you would like work done on this day, please contact us ASAP! Thank you! (419) 720-1100

Annie and Lena's Kiddie Carnival
Saturday July 9th
4937 Rudgate Toledo, Ohio

***$15 for a family which includes dinner. There will be games, tie dye, water slides, face painting and much more!Come join us for some family fun Saturday!

2011 charity dinner and auction

Well after 9 years we finally have this thing down! We have raised an unbelievable one-hundred,five-thousand dollars for 2011 and the donations keep coming in. Nine years ago when we entered into this journey we call fundraising the life expectancy for those with cystic fibrosis was a measly 25 years old. Now today the life expectancy is 37 years of age. 37 still isn't long enough but the amount of drugs and treatments available today has more than quadrupled since we had our first event. The newest drug on the horizon is aimed at the basic defect and the initial research is very promising.This means cf patients could take a pill to lesson the affects of their disease and ultimately live long productive lives free of the cruelty that cf leaves behind. So when you hear,"dollars buy science and science buys life for those with cystic fibrosis", Sal is living proof that these dollars are providing the necessary drugs and treatments that are keeping him healthy and strong.
Thanks so much to our committee and all of our volunteers for sharing of your time and talents. Special congrats to Erin Dzierwa and Angie O'Loughlin who are the 2011 Spirit of Humanity award winners. Dan Haffner of Haffner Florists and Jean and Joe Papp were honored this year for Sponsoring the Sal's Pals Event every year since it's existence.New friends of Sal's Pals, all the way from New York are The Cassalina Family. Margarete and Marc have two children with cystic fibrosis and have dedicated their lives to finding a cure. Margarete's book, Beyond Breathing gives us an account of her life's journey with cystic fibrosis. It's an amazing story and your life will surely be changed from reading this treasure. Margarete came all the way from New York to be our guest speaker and the audiance loved her!

Bp Oil and UPS Auto Logistics continue to be Title Sponsors for the Event. Both companies recently finished their respective golf outings and continue to help us in our fight against cf. Special thanks to Terry Jiannuzzi from BP, Jeremy Reinhart and Dave Sprock from UPS. These gentlemen continue to influence the individuals around them and help spread awareness of cystic fibrosis that in turn leads to funds for vital research. Thank you could never be enough for all that you do but I know that's not what motivates you!But I will say it any way, Thanks for all of your hard work and preparation in planning the golf outings.

Annie and Lena's Kiddie Carnival is coming up next! We hope you can join us!

Casino Trip to Greek Town is planned for Saturday March 12, 2011. Seats are limited call us for details!

Well, according to Punxsutawney Phil winter is almost over! Which means that the Annual Dinner and Auction is just around the corner. Mark your calenders for Saturday May 14Th!

Dedicated family and friends continue to come together throughout the year to volunteer, organize and participate in our events. Being working parents of 3 busy children is exhausting in itself. Trying to add more time for charity work, most days feels impossible. And in all honesty if Rick and I didn't have these dedicated individuals to motivate and inspire us I know that Sal's Pals would not be as successful as it is today. Sal continues to serve as a constant reminder for Rick and I about why it's so important to raise money and bring awareness for Cystic Fibrosis. Often times I forget that Sal has a disease because he IS doing so well. Then I have to remind myself how that came to be.Sal takes over 32 pills a day...and he is healthy. The life expectancy for CF continues to rise, 37 years to be exact. It has risen 10 years in Sal's lifetime! The Cystic Fibrosis Foundation continues to build it's pipeline for new medications that are aimed at treating cf, managing symptoms and ultimately eradication it all together.I know that Sal does so well because of the medications and treatments that are available for him. Rick and I want to ensure that dollar by dollar, event by event that the medication pipeline is able to develop the necessary medications to keep Sal healthy!

It is easy for one to understand Rick and I's passion for fighting cf but Iam always amazed at the dedication and time our friends and family put forth. So I asked one of our friends to share with all of you, why he has joined in our fight.Kris is a teacher at Sal's school but was a friend long before Sal was a student.




Dear Sal,

Energetic. Enthusiastic. Spirited. These are all qualities of an average 10 year old. Sure you share these qualities, but you are far from "average.” I’m sure anyone that has met you would agree.

From your contagious giggle and smile to your cockiness (of which, I’m sure you got from your father); your ability to exaggerate slightly to your strut in the hallway (of which, you definitely got from your father). But, most importantly, it’s your huge heart that sets you apart from your peers.

Before I met you, I didn’t know anyone that had Cystic Fibrosis or even had a clue what CF is. I would imagine that the hundreds of people that attend the dinner, wine opening, or golf scramble didn’t know what CF was either before they met you. In fact, I don’t think the majority of the people go to those events to fight CF. The majority attend each event because they, like me, have fallen in love with you. And it’s because you have CF that we fight.

Next year, when you’re in the 5th grade, I'll have the pleasure to teach you - but little do you know that you’ve already taught me far more than I can ever teach you. You’ve taught me how to give; taught me how to live; and taught me how to be a better person. And for that….I thank you!

With much love,
Wit

Happy New Year

Sal's Pals 9th Annual Dinner and Auction will be held Saturday May 14th at St. Francis de Sales High School. Doors open at 6pm. Please join us as we continue to fight CF!