Happy Thanksgiving!

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

“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

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

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

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

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

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!

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

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 :)

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

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.