Happy Holidays

Dear Fellow Volunteers;

I hope this note finds you all in great holiday cheer, happy, healthy, and surrounded by your family and friends.

As we look forward to 2010 and what will hopefully be another successful fund raising year, I can’t help but reflect on what we have accomplished thus far and how all of this started for me.

I remember very clearly that day in mid-winter of 2003 when Nikki came to my house and asked if I would help her and Jenny compose a letter to send area businesses, asking for support for a spaghetti dinner they wanted to put on to raise money for CF. Nikki said that not many details were worked out yet but they thought they could make about $300 or so if we could sell 100 tickets. I was 50 years old then and had the good and sometimes not so good fortune to visit many countries around the world and realized many life events (some better then others) that most people never get a chance to experience, no matter how long they live. I didn’t know it then but agreeing to write those letters that night was the moment that put me on a journey that changed my life forever.

Who knew that volunteerism could bring such profound joy to one’s life. Like the feeling you get when you have secured a new donor or have welcomed a new volunteer into the group that has realized the initial excitement we all started with at the beginning of all this, for the first time. Did anyone really know just how generous Americans are? I never dreamed that most businesses and individuals would give so freely to our cause. Being a first hand witness to the generosity of the donors that support us and seeing the kindness and caring with which all of the volunteers perform their labors of love has melted the cynicism from my heart that had slowly built up over years.

The greatest joy derived from this endeavor for me is that it has brought me closer to many family members, especially Nikki and Jenny, without whom none of this would be possible. In my mind both of you are equally credited with not only raising tons of money for CF but also for enhancing the lives of all the volunteers you have assembled to join your cause. The two of you are always thanking us volunteers but in reality it’s we that owe you a debt of gratitude for enriching our lives with the benefits derived from volunteering. All of us are better persons for having being brought into this thing you started some seven years ago.

As for my co-volunteers, Ron, Bree, Kris, Angie, Maria, Jeremy, Chris, Andrea, Joe, Shannon, Brian, Michelle, Erin, Vikki, Matt and the rest, thank you for all that you do, for caring so much about Sal. You feel like family to me and I’m sure the rest of the Pinardo & Jiannuzzi family feel the same way. We can never repay your efforts but I assure you that we stand ready to help each of you in any way we can.

You are a dynamic group that has achieved far beyond any of our expectations. Your effort to create a future for others seems to say that you must seize the moment or loose it to eternity. Your fight for the future has you living in it today. Your enthusiasm to succeed as a group has an aura about it that draws the good from others and makes them want to be part of your team. I don’t say these things just to say them. I promise you that you all have a part in changing people’s lives for the better and in turn, in a relative way, are helping make the world what it might and ought to be. I realize that some who read this will think what lofty ideals this guy has. Fact is every word is true.

Best wishes for the upcoming holidays, hope to see you all at the first meeting next year.


Terry J.

Uncork A Cure!

Help us generate additional fundraising dollars to continue funding CF research. Sal's Pals was chosen as a member of a newly established program offered through The Andersons. Go to any of the four local Anderson's retail stores - Maumee, Toledo/Talmadge Rd., Woodville, or the Sylvania Food Market, and purchase Sal's Pals wine for $9.99 per bottle. There are four varietals available - Chardonnay, Cabernet Sauvignon, Merlot, and White Zinfandel. Sal's Pals will earn $2.00 for every bottle sold. This makes a great gift for the holidays, and gives you a chance to support Sal's Pals in a special way. Cheers!

Fall Update

The Wine Tasting was a big hit! Our food definitely was a crowd pleaser! Chuck Metz, who we met from a family friend, donated and prepared the majority of the food. This kind of donation allows for us to be able to cut down on our expenses and donate more money to CF. I know Chuck and his wife Birdie hate thank-yous but these acts of generosity are what make Sal's Pals what it is today. So from the bottom of my heart...THANK-YOU!!!! Sal's Aunt Nikki, my best friend, motivator and ridiculously passionate sister is the other driving force behind the Wine Tasting. Nikki chairs the event and handles everything from tickets to sponsors and everything in between. Without Nikki's efforts there would be no wine tasting. So thanks Nik for making your vision a reality! I can't forget all of our friends who get all the people there, volunteer their time and stay late to celebrate, You Guys Rock!

On another note I recently went to this beauty seminar. I dragged Nikki there with me so we could get some deals on products. We were there to get discounts on the products I love but the seminar was about becoming representatives to sell their products. The woman shared with us how she left her career as a teacher and has never been happier, making her dreams come true as a beauty rep. After sharing with us, she had some questions, "Do you feel like you could be doing more for your life?" "Do you feel like you could be happier doing something else?" "Do you feel rewarded in life by the things that you do?" Pretty deep for a beauty seminar. But I think the message was trying to get you to think about being beautiful from the inside out. As I sat there listening to the woman ask these questions I was shocked how many women in the room were unhappy with their lives. As I sat and reflected on my own thoughts on the matter I realized how happy I am with my life. So often we get caught up with the things that we want to do, that we forget what is right in front of us. A great quote that I saw recently said,"Live life how you imagined." I always imagined that I would get married and have a family, though, I never imagined that I would have a child with a terminal illness; what I did imagine was that I would be a part of something bigger than myself. I just never imagined it would be for cystic fibrosis. When Sal was first diagnosed I had mixed feelings about how I would handle the situation... Do we tell everyone... do we talk about it? Rick and I had talked about having a big family but after Sal we knew that we couldn't imagine having another child with CF. I knew how badly Rick wanted more children and he never talked much about Sal's diagnosis. One day I finally told Rick that if he wanted to leave I would understand. I loved him so much that I wanted to make sure that he would be happy. Rick looked at me completely shocked and asked if I was crazy? I explained that I wasn't crazy but that this was going to be our life and it wasn't going to always be easy and it was important to me that he was always happy. From that day on, I knew that we needed to do something to make a difference because we would never forgive ourselves if we didn't. Our life may be crazy but I am living it the way I imagined...and couldn't be happier!

Sal had his appointment this week and is still doing AWESOME! Keep your fingers crossed as we approach cold and flu season! We have our H1N1 and flu vaccines so we are ready!

One last thing. Since I am having such a difficult time posting on a regular basis (I finish school in Dec!) I thought it would be cool to have a guest writer. So I will have different committee members give some insight into what Sal's Pals means to them and anything they would like to add about fighting CF!

Turn up your volume we have new songs!

Wine Tasting

Tickets are now available for the 3rd Annual Uncork a Cure Event. Tickets are $40 each which includes food and wine. The event will be held at Stone Oak Country Club on October 2nd from 7pm to 10pm. Come help us Uncork a Cure for CF! You can contact me @ salspals2004@yahoo.com for tickets.

Little Kid's Carnival

Sal's little cousin Annie (age 4) came up to me out of the blue one day and said, " Aunt Jenny I want to do a fumraiser for Sal." (I didn't misspell fundraiser that's what she called it.) I couldn't decide if I wanted to laugh or cry. I thought to myself, how in the world does a 4 year old come up with a fundraiser. Do we talk about Sal's Pals so much that our kids have it embedded in their brains? Annie answered that question for me, "Aunt Jenny, I don't want Sal to be sick anymore so you can take the money and give it to his doctor so he doesn't have CF."
I picked little Annie up and squeezed her tightly. You see Annie gets it. For years I would get so frustrated with others. I would see all of my family and friends or even strangers whom I'd never met trying to make a difference in the lives of those with CF. Yet some people closest to the disease do nothing. I had a CF mom come up to me at an event once and said, "My son has had CF for 32 years and I have never once thought about raising money for others with CF." I almost fell over. I wasn't even sure how to respond. Then I politely said, "I couldn't live with myself if anything ever happened to Sal and we didn't do everything in our power to help him." I notice the woman had tears in her eyes and she just said, "thank-you".
That's what this is all about - people helping people. Even the littlest of people can inspire others! Thanks Annie!

With summer ending quickly, I'm proud I managed to pull out a post for the month of August! Sal's pals have been very busy the last couple of weeks. We had the first ever Brother's in Blue Charity Bike Run. Our crowd was small but mighty! The roar of the bikes when they took off was pretty cool! Many of the bikers in attendance had never attended a Sal's Pals Event. We were able to generate awareness to a whole new group of future Sal's Pals! Once the bikers came back we began round two with a cornhole tournament. A band serenaded all of us as we watched as Ron and Jeremy win the first ever Sal's Pals Cornhole Tourny!
Yesterday proved to be a beautiful day for the 6th Annual Golf Outing. We had 34 teams out at Fallen Timbers. I'm proud to say that we had more women golfers this year than ever before. I spent most of my day at the 16th hole and more men than women hit the water...way to go ladies! Sal had a blast at his hole with my Dad. He called Rick every time someone used his shot, he was so excited! We also had a lot of gimmick holes this year. You either love them or you hate them! We get mixed reviews every year but the general consensus is that people enjoy them. The point of the golf outing is to have FUN and raise awareness and in looking at the golfers faces I think we accomplished both. Thanks to all the volunteers for your continued support. I feel like I am constantly thanking the same individuals, I hope all of you really do realize that Rick and I could not accomplish any of these events if it wasn't for your unfailing love, support and generosity.

Upcoming Events

July 18th
Bring the whole fam to Annie Bazzoli's Little Kid Carnival
August 22nd
First ever Brothers in Blue Motorcycle Ride and After Party @ IBEW Pavillion. After the ride there will be a live band and food.
August 30th
Sal's Pals Golf Outing @ Fallen Timbers
email us for more info at salspals2004@yahoo.com

Dance For Chance

Back around Christmas time my neighbor, 15 year old Katie asked if I would be willing to come to her freshman health class to help her and a friend do a presentation on CF. The girls did a great job and I was really surprised at how attentive the students were. I did not have my side kick there with me that day (Sal was at school). The kids always love to listen to Sal, especially the girls, he defiantly always seems to know just what to say to them. Katie's older brother Matt also attends Southview High School and has always been very involved with a group called Dance for Chance. The Dance for Chance is an event in itself. Kids from the high school participate by creating teams. In order to participate the kids must raise money for charities that the kids vote on. This year my two neighbor cuties nominated Sal's Pals as one of the recipient charities and we won! Now there is a bit of irony surrounding this situation. Sal's older sister Olivia attends the rival school in town, Northview. Sal also happens to be the ball boy for the Northview girl's basketball team. And can you guess who the teacher was that was leading the event... the Girl's assistant Varsity Basketball Coach! However, on this day, were all part of one community coming together. Matt let Sal be part of his "Green Team" and every hour he did the dance and stayed on his feet as the kids were not allowed to sit from noon until midnight. Throughout the day the kids had activities from basketball, to Jenga, to name that tune. For each activity the teams were scored and whoever had the most points at the end of the day got bragging rights for the rest of the year. The students raised over $21,000 for 3 area charities. At the end of the night the students presented Sal with a check. To those teachers, especially Steve Swaggerty, who inspire our youth each and every day to be better citizens and responsible, caring people the world needs more of you! To Katie and Matt, thanks for being such wonderful thoughtful neighbors and for realizing that you can make a difference and of course for putting a great big smile on Sal's face!

7th Annual Sal's Pals Charity Event

Well I feel absolutely terrible! 6 months have gone by and I have failed miserably at my New Year's resolution! The good news is that I did get A's in each of 8 classes that I took over the last 6 months. I have been a little busy, but no excuses. I have a lot of catching up to do and lots of new events to spread the word on!
First things first.... Sal's Pals 7th Annual Dinner proved to be another spectacular night. Given the economy we were all a little worried as to how our attendance and profits would go. $90,000 later we got our answer. Many events across the country had been canceled due to the economy, but our event actually grew. We were able to reach out to many new faces and those new faces branch out and it just keeps going strong. A big thanks to our volunteer of the year Maria Jiannuzzi, and the sponsor of the year UPS. Both are pictured above, this year would not have been as successful without their continued support!
One memory that sticks out in my mind from this year's event happened during the Bid For a Cure Speech. Rick and Sal started the bidding off at one-thousand dollars. Never in a millions years did I think that we would get a 1000 dollar sponsor, but we had to start somewhere. Just as I was glancing over at Rick to start moving things along, I saw Rick's eyes light up and yell out, "Thank you, thank you so much!" Sal jumped up and down on the stage and Rick nearly forgot he needed to keep going, I started to pan the room to find out who this mystery bidder could be and then I spotted her as she was writing out the check. As I got closer to the table I saw my good friend Bree walking from the table with tears coming down her face. The mystery bidder happened to be Tricia Schweer. Tricia is the mother of 3 year-old Briahna Schweer. Briahna was diagnosed with a very rare mass that was invading her chest cavity involving her heart and lungs. Her recent surgery was extremely life threatening, but to not have the surgery had an even worse prognosis. Briahna's family and friends put together a benefit to try and help raise money to offset the family's medical expenses during their very difficult time. Many of the Sal's Pals committee members helped the family to organize the event, sell tickets and even work. Rick and I attended the event and I remember the family thanking us, Sal's Pals, for all of our help. I felt that my help was so trivial in the whole grand scheme of things but Rick leaned over to me and whispered, its not what we have done, it's what we have helped to create. Looking around the room we had at least 10 of our committee members there supporting the event. None of them knew Brianna or her parents but they knew how to run a charity event. I have never been so proud of my friends and family as I was that night.
As for Briahna, she was able to finally have surgery and is recovering. Last I heard she was doing remarkably well. As for Sal's Pals, we were able to reach out and help another family in the same way that the community has reached out and helped us. As for the Schweer family their strength and generosity is a constant reminder of what charity work is all about!

Sal's Pals goes to school

Well it has been longer than 10 days but I think that I am getting better at the updates. Last Friday Sal and I got to meet up with our good friend Mr. Taylor. Mr. Taylor is the principal at Eagle Point Elementary School in Rossford, Ohio. Before a school assembly we started our day visiting different classrooms and giving the students a chance to meet Sal. Many of them had questions ready to ask, the most popular question they had was, "How has CF changed your life?" Sal was unsure how to answer this question. He looked up at me, confusion in his eyes, then assertively he exclaimed, "It hasn't!" I smiled at his reply but I could tell the kids were puzzled. I went on to explain to the kids that Sal was born with CF. Some of the little ones wanted to know if you could catch CF, Sal was quick to explain to them that you could not. I explained how Sal got the disease and the kids were much more relaxed. The presentation went really well. Students watched the dvd Bill Nie The Science Guy on CF. The video does a great job explaining the disease in a fun way. Sal then showed them what it is like for him to do his vest and his airway clearance device. Afterwards, the students answered questions about CF and won CF bears and bracelets for their participation. The assembly kicked off a penny race that the school will have in order to raise money for our Great Strides team. Rossford students will come to The Great Strides Walk on Saturday, May 2nd and present the money they raise while supporting the walk.
Some of these kids may never encounter anyone with CF again, some won't remember next week what CF is; however, in taking the time to visit schools we are raising awareness and educating students. This provides the opportunity for them to not only raise funds but to get involved in their community. Sal enabled the kids to put a face to CF and I firmly believe that is what they will remember. When Sal and I walked into the classrooms they were so excited to meet him and anxious to find out more about him. Seeing my 7-year-old son explain his terrible disease to his peers so effortlessly, not once realizing how different his life truly is just means we are doing something right. My goal for Sal is to never treat him differently, to make sure that he understands this is his life and CF is a part of it. By going out and raising awareness we can only hope that somehow it will lead to something positive. I don't think that Jeff Taylor realizes how unique and special he is. How grateful we are that he provides this opportunity for us and how much he means to Sal. Jeff was my sister Nikki's boss several years ago. She only knew him a short time when she asked if he would support a school wide fundraiser for CF. She told Jeff our story and without a second thought he was eager to help. 3 schools, and years later Mr. Taylor is almost an expert on CF, Sal absolutely idealizes him and he is an inspiration to me. When people go out of their way to help for no other reason than out of sheer kindness I am always moved. Jeff Taylor is one of those people. Thanks Jeff for your continued enthusiasm, support and inspiration!

New Year's Wristband

This year one of my New Year's resolutions is to make sure that I update this blog every 10 days. We will see how I do! During this holiday season I felt extremely blessed. We continue to be blessed with the most amazing friends and family. Recently, we were out with some friends and I couldn't help but notice that everyone sitting with us had on an orange "Fight CF" bracelet. The bracelets are extremely hard to miss, not to mention extremely hard to match with an outfit! Yet everyone had their bright orange bracelet on. The wristbands are meant to show your support for a cause and help create awareness.  Each time I see someone wearing the CF bracelet it means that someone else thought about CF that day. Someone that doesn't necessarily have to, but they do it because they care. I did not mention that I noticed everyone sporting the wristband, but the fact that they wear their bracelets so proudly means the world to me.  So in honor of the "Spirit of the Wristbands" we will have a column on our blog site that will show you where Sal's Pals is now. Rick's cousin Dave has been traveling around the country with his wristband taking pictures at his different destinations. Dave thought it would be a great idea to post the pictures of where the wristband has been. So if you are somewhere and your sportin' your wristband, hold it up high, snap a photo and send it on to me!