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.