Sal's Pals

I am thankful for...

2011-11-20T12:02:00.001-05:00

cbsnews.com/video/watch/?id=7386952nI 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

2011-08-10T10:46:00.001-04:00

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

2011-08-10T10:29:00.001-04:00

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

2011-07-02T11:44:00.003-04:00

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

2011-06-15T20:08:00.006-04:00

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!

2011-02-02T13:06:00.003-05:00

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

2011-01-09T21:08:00.002-05:00

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!

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Happy Thanksgiving!

2010-11-22T22:56:00.005-05:00

I am so thankful to be blessed with so many friends and family members who are willing to give of their time and talents to help us fight CF. Our cherished photographer,Gerri of Serendipity Photography, came up with a great idea to photograph our committee members and their families. By the looks of the pictures you can see how much fun we had taking them! Thanks Gerri for the wonderful idea!Happy Thanksgiving!

Uncork A Cure

2010-11-07T11:27:00.011-05:00

“You have not lived until you have given to someone who can never repay you.”
-John Bunyan

October 1, 2010 marked the Sal’s Pals 4th Annual Uncork A Cure.
Thanks to all of our sponsors and guests, especially our committed wine vendors that continue to support our event year after year, we were able to raise over $8,400 for the Cystic Fibrosis Foundation. The money will continue to help the foundation research for new preventative drugs and help continue the fight that each of you has joined with us in funding research for a cure.

a sleepless night

I'm right here with you.
I cannot sleep.
I am praying.
I cannot sleep.
I am hoping.
I cannot sleep.
I am thinking.
I am loving.
I am breathing.
I am living.

The poem above is an excerpt from Eva Markvoort’s blog, a young woman who struggled for air. Eva died earlier this year at age 25 from complications after a double lung transplant. Prior to her death, she remarkably shared her life through her blog, sparing no honesty in describing the terror of battling cystic fibrosis. Eva detailed her body's tragic rejection of her donated lungs, lungs she needed to live, and her life dealing with Cystic Fibrosis.
She was grateful for breathing.
I am often sleepless, often staying up entirely too late, am over thinking, praying, loving. I am grateful for all that I have. I have not ever questioned though, the air that I breathe, it is something I obviously take for granted. A day doesn’t pass that I am not thankful for Sal’s health, for being able to watch him play football, for the opportunity to help him with his homework, for being his aunt. I am inspired by Eva. I am inspired by the woman I approached on St. Patty’s day several years ago while selling beads for a cure. I told her I was raising money for CF, she told me she had CF. She was 57 years old. I am inspired by Emily Schaller, and Somer Love, and their CF fight, and for the awareness they bring to others. I am inspired when I read letters like this one I recently read on a blog:

Hey Connor's Mom...   
You had me when you mentioned imagining him running and breathing with ease... I'll be 50 in April. I have CF - though my early years were not as hard as Connor's, they weren't easy. I do breathe easily now, because of a beautiful 17-year-old girl from Iowa named Kari... I breathe with her gift -- with her lungs. What you're trying to do, raising money for the CFF, may allow your precious Connor to someday breathe more easily without someone else' lungs. I truly admire you. I'm alive today because of people like you. Thank you.   I hope your precious Connor has a more beautiful and incredible life than I have. I know he's got a head start because I sense he has an incredible Mom and Dad and family.
 Love, Steve

Connor is breathing easily now, just not here where he belongs. Connor was waiting for a transplant and at age 7, about 5 months ago, he died from cystic fibrosis.

Did You Know...
There are over 100,000 people, the size of a small city, on the transplant list in the US today.
That in the time it takes you to shower, 1 new name will be added to the transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US alone.

While Sal appears to be a perfectly normal, amazingly handsome, overly arrogant, nine-year-old boy, he still spends hours each day on treatments that allow his body to stay a step ahead of the disease that he is inflicted with. I have never allowed myself to imagine the day that Sal would be in one of these victims’ place and I can’t imagine my fight today without the love and support of each and every one of you that have sacrificed your time, talents and money to help Sal’s Pals be the organization that it is today. Thank you! I hope that you will continue to support us in making CF stand for CURE FOUND!

Until there is a cure,
Aunt Nikki

2010-08-19T14:06:00.008-04:00

Bring the whole family
out for the Annual Kiddie Carnival
Saturday August 21 at 4pm!
Rain Date: Sun. Aug. 22 @2pm

As promised we will keep featuring a guest blogger...

Ahhh, intro to a blog………..I am Jeremy Reinhart for those who don’t me. I guess best description of my relationship to Sal’s Pals, is I met Rick when he and I were Sal’s age. For those wondering, yes Rick was alpha male at the age of eight (I know Sal just turned nine, but we met in 2nd grade). I transferred schools to Regina Coeli and he might as well of peed on my chair to let me know he was in charge. Luckily for our relationship, I was just looking to entertain and mix in some learning. Our relationship through all of life’s experiences and challenges is now 24 years old and as strong as I can remember it. Wow, maybe he and I should have a 25th anniversary party? When I spend time with Sal it is scary, because it is Rick, I want to take him outside and just school him in some four square for old times. Anyways, along with this history comes his wonderful wife and family. Jenny and I have always had a special relationship and a part of me thinks she has always considered me the most normal (and good looking) of our group of friends. Either way we have a ton of memories that go back further then most relationships.

OK, so Cystic Fibrosis…………never seen it coming. Never had any connection to it or knowledge of what it was until the day I found out Sal had it. It’s a part of my everyday life now. I find myself waiting for a meeting to start (at work, orange bracelets on) and explaining to people what it is, what it means to me. I am almost interviewed daily for a Sal’s Pals commercial. For them I just gave them some knowledge, what they don’t know is every time when I am done………I see Sal’s face, Rick, Mrs. P, all the family, the history and the fight that is left. I don’t say that as a burden, there is no cross. There is only one cross and Sal carries that with the courage I could only wish to have. My job is to take advantage of the opportunity to try and make a difference.

So let’s talk about that opportunity, I will never forgive myself if I didn’t give my sell for how we go about raising as much money as possible for Cystic Fibrosis Foundation. It’s in your everyday life; we all work somewhere and have access to large corporation and their need to donate money. When you carry your passion to fight with you daily, people notice, they are intrigued, they want to help. There is not a person in the world that is not contagious to positive energy (look I am not a Zen master, there is no yoga); it’s a fact and is the same for negative energy. Look, I am not saying read this, go to work tomorrow and start selling it…..not at all. It has to be built and if it is a part of you and something you truly have passion for, it will come up. There is no, how to or step by step approach. I would just look into your heart and your situation. Truly understand if you want to make a difference and if your situation maybe an opportunity to help the fight. If you look at Sal’s Pals financial statements year over year, there is no doubt you will see that our growth and ability to truly make a larger impact is through the corporate sponsorship of the people that are involved. Lord knows we can’t have anymore expansion, black tie, different dinner,{insert idea here}………meetings, YIKES!

DEEEEEEEEEEEEEP BREATH, here’s the good news! Your not alone, you have some of the most passionate people in the world waiting, you get them there once, just once and I promise you, they will get it, they will feel it, they will understand why you are so passionate and join our fight.

MOVIE 2010- Final Cut.m4v

2010-08-03T22:45:00.002-04:00

This was the video that we made for the 2010 Dinner. You will need to turn off the Blog music down on the right side of your screen so that you can hear the video. Enjoy!

The Big Nine

2010-08-03T21:36:00.009-04:00

Upcoming Events:

August 21st- Little Kids Carnival

August 29th- Sal's Pals Golf Outing

October 1st- 4th Annual Wine Opener

Where has the summer gone??? I reluctantly have been picking up school supplies here and there and the kids have been counting the amount of summer vacation they have left.One of the surest signs that summer is ending is FOOTBALL season beginning! This year Sal decided he wanted to play tackle football. To be honest I can't tell who's more excited Rick, my Dad or Sal. Sal's first practice was yesterday and both my Dad and Rick sat patiently on the sidelines for two hours in the 80 degree weather. Football must be some sort of right of passage for fathers and sons. One as a mother I could never understand. But to watch all three of their faces just gleaming from ear to ear you could feel just how excited they were. As I think back to those first few weeks after Sal was born I remember wondering if he would be too out of breath to run, or if he would be too sick to play sports or quite frankly after I saw all the medications and treatments that the older kids had to take I didn't know if he could fit it all in even if he was healthy. The uncertainty of cystic fibrosis those first few years was defiantly the hardest. It taught us patience and acceptance over things that we could not control. It also taught us to go above and beyond with the things we could control. Over the last nine years one thing I have learned to do is to live for today, learn from yesterday and dream for tomorrow. I have no idea who coined that phrase but it helps me to put everything into perspective.I am sure that Rick and my Dad have dreamed about Sal playing football since the day he was born that's why watching him yesterday in 80 degree weather was so worth it! Happy 9TH Birthday Sal!

2010 Charity Dinner

2010-06-14T23:52:00.004-04:00

It's so hard to believe that we have been doing this event for 8 years. I never imagined that we would have evolved into something like this. Our initial goal that first year was, $10,000. 8 years later we have raised over a half a million dollars! This year Sal's Pals will turn in more than $110,000 to the Cystic Fibrosis Foundation!

What makes Sal's Pals so successful are the committed people who have joined our quest to raise funds and awareness for CF. Many of them sacrifice their own time with their families to help mine. In the weeks that lead up to the event countless hours are spent preparing, it at times can get extremely overwhelming. All of us work full time jobs and none of us are professional event planners, but somehow we are able to use all of our talents to pull it all together.

This year we filled the 500 person room, we had plenty of auction items and wonderful food. The room looked beautiful! Probably the two most awesome things of the night were Emily Schaller and Drew Tate. And all the while we were in search for a celebrity or some affluent speaker and we had both of these talented individuals right at our backdoor the entire time.

As I sit here and reflect over the last 8 years I realized that we don't have to have the fanciest hall or the best sound system or black ties at our event. But what we do need are people who want to be a part of our event because they feel like they are making a difference. Whether they are attendees, volunteers or sponsors our grassroots event exists because of them. A million thanks to everyone for making Sal's Pals the best that it can be!

8th Annual Dinner & Auction

2010-04-14T07:52:00.005-04:00

Saturday May 8, 2010, Sal's Pals will host the 8th Annual Dinner & Auction! The event will be held at St. Francis de Sales High School from 6-11pm. Contact us now to purchase your tickets.

Happy St. Patty's Day!

2010-03-18T09:56:00.005-04:00

Lucky the Leprechaun was out in full force selling beads for a cure!
Thanks to everyone who supported our cause!

2010-02-20T22:36:00.013-05:00

Back in 2006 Rick and I were invited to attend the National Leadership Council Conference for the Cystic Fibrosis Foundation. It was one of the most amazing and inspiring things that I have ever been apart of. While at the conference we were asked to go out and speak with our State Representatives and Senators about legislation that would affect CF. Part of what we were lobbing for was the mandatory screening for all newborns to detect CF. Everyones hard work paid off because just nine months later the bill passed!
While we were at the 4 day conference there was a young couple that spoke to us about their two children who had CF. The couple spoke about their trials and tribulations in the fundraising world and how their outlook on life had been so dramatically changed after finding out that both of their children had CF. As both of them spoke you couldn't help but feel like you had known them forever.Their sheer genuineness and compassion for others was extremely moving and memorable. About a year later I received a phone call from The CF Foundation to tell me that Jena Cassalina had passed away at the age of 13. I remember thinking that there must have been some terrible accident because she was way to young to have passed away from CF. I quickly called Rick at work and his response was the same as mine. We both sat on the phone in silence and shocked. I guess when you hear life expectancy of 37 you forget it's just an average.
Margarete Cassalina, Jena's mom recently published a book about her families life with CF. The book has already won awards and received rave reviews. I just ordered my copy today and can't wait to read it! Even more exciting the book is being made into a movie that will start filming later this spring! Check out the website to find the book and you can see the A- List actors that they already enlisted for the movie.
www.margaretecassalina.com

Last week Sal and I went back to Eagle Point Elementary to talk about CF with the students to kick off their annual Penny Races fundraiser for CF. Usually Jeff (the principal) and I are the ones who do all the talking but this year Sal was the one who spoke to all of the kids. Jeff and I just sat back in amazement as we watched Sal speak to the kids in such a grown-up manner.One of the older kids asked the question, do you die from CF? Sal quickly looked over at me unsure of how to handle the question. I was prepared to answer and rattled off the life expectancy. I could see the 6Th graders trying to do the math in their heads as Sal just sat there cool as could be ready to answer the next question. The next kid asked Sal,Do you hate having CF? Jeff and I both looked at each other waiting to hear Sal's answer. I was really afraid Sal was going to say something like "no dude it sucks what are ya thinkin".Surprisingly enough Sal looked right at the boy and said, " no I don't mind having CF because I know that we are doing good things for CF and if I didn't have CF all of my family and friends wouldn't have Sal's Pals and we couldn't help cure CF". I think Jeff and I both had tears. I had never heard Sal say anything like this before. What a sacrifice this 8 year old was willing to make. The arsenal of questions continued to fire so I didn't have much time to really think about what Sal had said until later that night when I received another one of those phone calls. I couldn't help but feel like I had mislead all the kids with that average life expectancy that I had told them because the phone call was about a 19 year old that had passed away earlier in the day from CF. I was sad and angry all at the same time. These young people struggle enough with their disease and dying just shouldn't have to be something that they have to worry about. In the mist of planning for this years event this was a quick reality check about why we do what we do.I quickly remembered what Sal had told that class earlier in the day about not minding that he had CF. So our fight continues until we find a cure for this terrible disease not just for Sal but the 30,000 others like him.

My friend shared this video with me.
Eva is one of those people that even at the end of her life she is thinking of others. Her message is all about LOVE. Eva doesn't talk about material possessions or living in a big house or driving a fancy car. She talks about being loved and showing love. She goes on to talk about being blessed with tremendous family and friends. Eva is a true inspiration and we can all learn a lesson from her.

Happy February All :)

2010-02-06T18:50:00.008-05:00

I'm not sure who all looks into the blog but I'll introduce myself just in case. I'm Maria, Jenny's younger sister and Sal's Aunt. I get to be the guest blogger this week! I apologize if this gets crazy long but I'm supposed to say anything about CF and Sal and any thoughts I'd like to share with you all-Sal is 8 years old now and I've had that long to think about CF and Sal...and there is a lot to think about!
And the Sal's Pals charity has grown and done so very much in this time that it just amazes me.

I could literally write a book about the past eight years and how Sal and the charity and CF have affected me and my outlook on life. But there are a few things that have happened that I think are worth sharing with you today.

For those of you that don't know him Salvatore is an amazing little boy. He is adorable to say the least, and he is just the funniest little kid ever. You can tell he's related to the Jiannuzzi's because he sure can tell a story! He can be a little monster like all other 8 year old boys, but he can also be the sweetest person in the whole world. Just last weekend, I came home to Toledo and after his big sister's basketball game everyone was running around or hanging out waiting for Olivia to come out from the locker room. Sal came up and gave me a hug. I asked him if I could pick him up and he said yes ( I asked because since he's gotten a little older it is rare for him to let me do this because that would be embarrassing!). I picked him up and swung him around and then I held him like a little baby. He loved it! I just squeezed him and thought...how old would he get before I wasn't allowed to do this anymore? And I thought - thank God he still lets me do this. I didn't want to put him down because I cherish every moment I get with him. And as hard as we all work to find a cure it still scares me that he'll get sicker. It still scares me that sometime in the near future I may not be able to hold Sal like that again. So I squeezed him a little tighter and put him down, because, thank goodness, he's gained weight and he's getting heavy!!! That's a good thing for people with cystic fibrosis so that made me happy.

Another moment I would like to share with you happened on Christmas Day. Sal was riding in the car with me and my boyfriend to set up for a surprise movie for my parents and we had to make a stop along the way to pick up some forgotten items. As we pulled into the gas station on Sylvania and Talmadge we all couldn't help but notice the man standing by the road. He was about Sal's Mom's age and he looked so beaten down, so sad and depressed, holding up a cardboard sign. He was homeless. For some reason we had concluded that he might need a ride somewhere. Sal wanted us to give him a ride. He said "come on Aunt Maria, can't we just give him a ride". I explained to Sal that you can't give strangers a ride, even if they are homeless because you never know if they are really a bad person and would try to hurt you.
Sal looked back at the man and back to me and said he won't hurt us. I said I'm sorry Sal we can't give him a ride, I feel bad, but we can't. After coming back to the car I had a feeling of guilt in the pit of my stomach. Here I was picking up food and drinks so that I could spend an amazing Christmas day with the people I love most, and there was this man, alone, standing in the freezing cold and rain with no one that he loved. Sal was again trying to convince me to give him a ride. I said you know what we can do Sal, we can give him food and we can give him money, that way he can use it to get a ride somewhere. This made Sal happy and a little more content and we started making a plate of food for him from the things we were taking to the theater and Jordon and I gathered what little cash we had on us. We drove over to the man and I got out of the car. As I jogged over to this man I could see his face change from despair to gratitude. Even in the rain I could see him start to cry. I told him "Merry Christmas", trying not to cry myself. And he said "thank you, thank you." How is it that once again Sal has inspired me to help other people? This little man always finds a way into my heart to help me help others and it is absolutely amazing. Here is a little boy who has recieved so much love and support from others, strangers even. I know that Sal has been brought up well, he has manners, goes to a very good school, has God in his life, but I do not think that these are the reasons Sal wanted to help that homeless man. I think that Sal has been around so much generosity and been given so much love and support from Sal's Pals and complete strangers even, that he has been inspired to help others. I know that I am not the only one that has been inspired to help others because of the help we have recieved through Sal's Pals. Pay it forward, right?

Today I found out that two young people in Toledo lost their battle to CF. And I think that's what it is isn't it? A battle, struggling to hang on and breathe and fight this disease. And I thought like that on my long drive home from work today. 19...24? How old am I? How much longer would I have with Sal? 11 years? That is not enough. And I lost it. I just completely broke down in my car. I felt so helpless. I felt so aweful for those families. And all I could think of was I never want to feel this way again...not about Sal, not because of a disease.
And sitting here now I am remembering Jenny telling all of us at the last meeting that she and Rick had read Sal's journal. And in it he had a list of things he wanted to accomplish in order of importance in his life. And he had written:
#1. Join the ARMY
#2. Cure CF
#3. Get out of the ARMY
#4. Join the NFL
I laughed and cried when they said these things. I believe Sal's list went on but these were the most important. First, how hilarious is it that Sal wants to join and get out of the ARMY! That is so Sal. But how incredibly amazing and yet sad is it that his #2 is cure CF. I think that it is all of our hard work and determination that put that into Sal's list. I don't know what other kids with CF would put on their list but Sal did not put "try to find" a cure for CF, he put cure CF. He is already confident that we will find a cure. A very important person called me and I told him the news I had heard today and I started to cry. He listened and then he said so this has to do with your nephew? I said yes. He said you shouldn't worry like that. Worrying and negative thoughts do no good for you. They make things worse. He said if you're gonna be sad, be sad for those families, but don't be sad for Sal. He isn't in the hospital and he is doing well. Don't think negative things about him. He was right. And his words reminded me why I have two things on me each day without fail. One is my Sal's Pals Fight CF orange bracelet. The other is a tattoo of the logo I drew for Sal's Pals. I have these on me for so many reasons. First, they give me the ability to spread awareness, and they are a good at helping me do that! They give me an opportunity to talk about what they are for and what they mean to me. The next reason is that I live away from all of my family and think about them often - but I think of my nephew Sal EVERY day, and it has been that way since the moment I first found out that he had this disease. These two things constantly remind me of Sal and remind me to live my life to the fullest, and to cherish every moment of my life, because we never know when our last moment on earth will be. They remind me that for some people, every day is a struggle. For some people it is a battle just to keep on breathing. They remind me that life is a gift and should be treated as a gift. I may not have everything in the world, I may not be rich or have my dream job, but I'm healthy, I'm loved, and I have the ability to help the people that need it. It reminds me to not stay mad for stupid reasons, it reminds me that life goes on and that we should never spend too long being sad or mad because everyone deserves to be happy. So why spend it angry, or bitter? Why dwell on our mistakes and our fears and our heartbreaks and trivial things? Worrying gets you no where. So I ask that we all be strong. That we pray for those that have lost their fight to CF, but that we remain positive and optimistic for those like our little Sal, who are still at battle. Let's be as determined as Sal's little but very BIG list of goals. Let's continue to spread awareness and inspire other people to help others, and help find a cure for CF.

LIVE, LOVE, BREATHE
<3 MARIA

DATES

2010-01-27T23:41:00.005-05:00

Mark your calenders for the following dates;

March 13th- Casino Trip to MGM Detroit
Cost of this trip is $40 but you will receive $20 back from the Casino upon arrival. We will be taking a tour bus that will be leaving from Home Depot on Secor @ 2:30 Saturday afternoon. Tickets are available now. Space is limited to the first 110 people.

March 17th- Annual St. Patty's Day Bead sale. Come help Lucky the Leprechaun fight CF. Our day will start early and we won't quit until we sell all of our beads!

May 1st- Great Strides Walk at Ottawa Park starts at 10 am. You can register now and join the Sal's Pals Team or feel free to create your own. Go to CFF.org and follow the links to Great Strides.

May 8th- 8th Annual Sal's Pals Charity Event. Doors open at 6pm @ St. Francis De Sales. This is the event that started it all! Tickets will be available soon! Currently we are looking for unique one of a kind items to help with our auctions.

Happy Holidays

2009-12-13T17:37:00.001-05:00

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.

2009-11-19T17:58:00.001-05:00

Uncork A Cure!

2009-11-10T07:59:00.005-05:00

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

2009-11-06T09:21:00.007-05:00

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

2009-08-31T23:58:00.005-04:00

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

2009-08-31T23:12:00.015-04:00

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!

2009-08-31T22:28:00.013-04:00

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

2009-07-05T14:54:00.006-04:00

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

2009-07-05T14:49:00.000-04:00

Dance For Chance

2009-07-01T02:27:00.002-04:00

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

2009-07-01T01:15:00.009-04:00

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

2009-01-28T16:05:00.012-05:00

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

2009-01-03T01:04:00.011-05:00

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!

Sal's Letter

2008-11-17T02:53:00.009-05:00

I have often wondered how Sal feels about all of the fundraising that we do. Fundraising is all he has ever known. Since he was 18-months-old he has watched others around him work for Sals Pals. Don't get me wrong we do not eat, breath and sleep fundraisers although some weeks it does feel that way. Our family works and plays like anyone else.

Two years ago we attended a fundraiser and I got up in front of the audience with Sal to tell our CF story. Sal had never actually gone up on stage with me before. As I started to explain my connection with CF to the audience; before I could even introduce him, Sal was proudly waiving his hand up in the air exclaiming, "Hi I'm Sal, I am the one who has CF." So now that we have established to the chuckling crowd who Sal is, I continued on with my speech. I practiced this speech a hundred times but never had Sal been at my side. As Sal looked up at me, listening so intently, my heart just sank. Here I was standing up on stage pleading with these people about why we desperately need money for CF. For the first time I could feel it - I knew that Sal knew why it was so important to raise money. As I was trying to finish, tears streamed down my face. Out of the corner of my eye I could see tears running down Sals face too. He very gently grabbed my hand so I could finish. After the speech I knelt down beside him and hugged him. When we stood up our audience was on their feet. I think the audience felt the impact of what they had just witnessed. On the car ride home that night I asked Sal what he thought of my speech. He quickly responded, "I think you really need me up there mom." His smile was contagious and Rick and I couldn't help but laugh.

When Rick and I decided that we wanted to raise money for CF, we did it because we knew that if anything ever happened to Sal and we did not try and do everyhting in our power to help him, we knew we could never forgive ourselves. Sal is energetic and happy. When I look at Sal I am constantly reminded of how precious life truly is and why it is so important that we make a difference for all those living with CF. This year after the wine tasting Sal wrote this letter. I wanted to share it because it's Sal's point of view. Reading his words about CF make all of those sleepless nights we have getting things ready for events all worth it. "Dollars buy science and science buys life for those afflicted with cystic fibrosis." He also drew the B.P. gas truck. B.P. has been one of our largest corporate sponsors over the years, so I guess Sal thinks he can drive one!

Meet Sal

2008-11-12T01:57:00.003-05:00

Flu Shot

2008-11-12T00:43:00.004-05:00

Last week we went into Cleveland for Sal's CF appointment. Generally our appointments are pretty boring. In this instance boring is always good because it means he is healthy. Sal weighed in at 59.6 pounds at this visit. Sal and I have had a bet going for a few months- I promised him once he weighed 60 pounds, he could pick out any restaurant for dinner. After the appointment we rounded up and took the fam to Olive Garden. Sal was so excited because we let him order off the adult menu. Our little seafood lover was in heaven with his seafood pasta! Our day would not have been complete without a little drama though... While we were at our appointment we thought it would be a good idea to get Sal his flu shot. Pretty routine-you would think, but we forgot to tell one person about our plans- Sal. He totally freaked out. Sal has always been great about doing whatever the doctor asks him and takes his meds like a champ. Whenever he needs blood work drawn, shots, or any type of invasive procedure we have not had a problem as long as we explain exactly what it is that he has to have done. You would have thought in the 2 hour drive to the appointment I would have remembered to tell him about the flu shot, but for whatever reason I forgot and he completely freaked out. We tried to rationalize with him why he needed to get the flu shot and he was fine with the rationale, but was just not going to get it that day. He wanted to go to his pediatrician the following week. After much discussion, we got nowhere; his mind was made up, he was just going to get it later. We even tried bribing him with Dave and Busters. When that didn't sway his mind, we knew his mind was made up. He tried to rationalize with us that he wouldn't catch the flu before next week. 20 minutes later we were still having the same discussion with our 7 year old. As much as it broke my heart that I forgot to remind him and caused him such anguish, I couldn't risk taking him to the pediatrician and exposing him to other patients there for sick visits. With Rick standing on one side and me on the other, we got the dreaded flu shot. Sal kind of stood there for a second, a little shocked that it was all over-and even more shocked I think that it wasn't that bad. But worse yet, he felt embarrassed of how he had acted in front of everyone. When he came out of his room a girl that was in the room next door, who couldn't have been more than 4-years-old, held up her arm in Sal's direction hoping to ease him and show him somebody was going through the same thing, she had an IV in. I'm sure the little girl wanted to make sure Sal was OK after the way that he had carried on. I think that's when Sal realized the flu shot wasn't so bad because he remembered when he had an IV last year. Funny how kids relate to things.
Well everyone here is healthy and we all have our flu shots. If anyone is nervous about getting one I'm sure Sal could talk you through!

Our 2nd event

2008-11-06T16:29:00.001-05:00

New Blog Spot

2008-11-04T01:13:00.001-05:00

After much discussion, we have decided to post a blog spot so we can keep everyone informed about Sal's Pals. Sal's Pals was created by family and friends in 2001 for a very special little guy named Sal. Sal was diagnosed with a genetic disease called cystic fibrosis at birth. Currently, there is no cure for CF and the life expectancy is 37 years. My husband Rick and I were terrified for our son's future and decided that we needed to find a way to help. We recruited family and friends to help us raise money so that we could give back to an organization that was helping our family, the Cystic Fibrosis Foundation. We decided to hold an annual fundraising dinner with 100% of the proceeds going to the foundation. Our committee got everything from auction items to the venue donated, keeping our costs at just a few hundred dollars! That first year we raised $32,000 and had a sell-out crowd of 350 people. Over the past six years our event has grown to 500 guests, pushing the half million dollar mark! Aside from the dollars that we are able to raise there is another component that I feel keeps bringing people back to our events, when you attend the event, that is when you will truly understand how magical it is. For me when I have others who are giving up time from their own families to help mine it is an unexplainable feeling. We are so fortunate to have such passionate volunteers and I think that is were it becomes magical for me. When I look around the room at the sea of people in attendance it stops me in my tracks to be in the company of so many generous people. Of course when most people meet Sal he is lighting up the room and they can't help but love him!
Sal's Pals hosts several other events throughout the year including; a wine tasting and several golf outings.
This new blog site will be able to keep people informed of upcoming events, as well as other events going on in the area. We will also be update the blog on Sal's happenings and how he is doing. With Sal now in second grade I think he can even update himself!