14 Years...

14 Years…

Where do I begin?  You would think after 14 years this would get easier, but to the contrary, each year is harder than the last.  I’ve spent over 80 hours in by basement this week. Oh, and its Wednesday! I’m hoping my boss doesn’t read this because there aren’t enough hours in the week! For those of you that know me, I hate my basement. It dark, my husband decorated it, and most days it’s Sal’s game room… as it should be. But this time of the year this is the auction room. …The Sal’s Pals room. On any given day you will find several computers down here in “the dungeon,” (as I call it,) along with tubs of items ready for bid.

Over the years I have had multiple people ask me, “How do you find the time to put this event on? How do you get everything donated? How do you keep doing this year after year?”  The answer is pretty simple: I’ve been blessed with a pretty awesome circle of people around me. I’m not saying any of this is easy. When you hear the old saying, “It takes a village…” Well, we have TEN zip codes of people helping us fight CF!  I guess what I am saying is, in order for this event to take place, we need a vast amount people from multiple organizations to come together to make this happen.

Would my life be easier if I just settled on the fact that Sal does above average for a cf patient? Absolutely! My house is a hot mess, I haven’t cooked dinner in a week, and I am slightly snappy these days to say the least. But at the end of the day, my house will work out. The laundry will get done, and we will eat some fabulous carry out! No one is naked and starving in the corner at our house!

Through the chaos, I try to remind myself that we are doing something that goes far beyond ourselves. So, when I start to freak out, this is what I have to remember: People’s lives depend on the work we do. Would it be easier for me to say, “We are taking break?” The answer is YES…for sure! But who’s life does that benefit? People are dying from CF every day because the right medication or treatment did not benefit them in time. How do I tell my son that I quit because my life is a little disrupted?  His life is disrupted every day by 40 pills and an hour worth of breathing treatments.

I can’t quit now even though I could come up with a million reasons to. I hate my basement… but I love my son more! When you start to put little things in perspective, everything else falls into place.

My advice… if you are committed to something bigger than yourself, no matter what that might be, you keep your vision and you dedicate yourself to whatever that is and you let that be your guide. For me, my son’s health and well-being is what I’m committed to. So, I stay dedicated, because I truly believe that the dollars we can raise for the CFF will give my Sal the years of life he needs. So, dungeon… here I come!

Sal's True Pals

 Last year we asked a few of Sal's Buddies to speak at the event during the Bid for a Cure. You can imagine how nervous I was to have five young boys ranging from 12 to 15 years speak in front of our crowd of more than 400 guests. When the boys each stood up on stage one by one my nervousness quickly turned into to pure joy. Each young man took the stage with such poise, strength and determination for their friend. These young men captured the true spirit of friendship and taught all of us in the room that at any age you can make a difference. Below you will find two of the speeches from that night written by the Szenderski brothers.

 Will Szenderski- age 14

 A couple years ago, when I was in the 6th grade our teacher was always giving us writing assignment in class that she liked to call Adventures in Writing. One particular assignment was to write a descriptive essay about someone important to us. It was to be titled “The Person I Admire Most” and this was my essay…

 My best friend Sal is a tall kid and is about 5”3, which is a lot taller than me and gives him an advantage in sports. He has blondish brown hair, kind of like mine. He also has big feet and wears a size 10 in basketball shoe. Sal is a good kid but he can be a little mean and bossy sometimes. That personality can actually come in handy because he is a great leader. He is always the one to lead us when we’re on the basketball court or football field. He is also one of the best players on our basketball and football teams. I love playing sports with him, especially because I usually win☺ Sal also has a disease called Cystic Fibrosis that makes it hard for him to breathe. He doesn’t let that affect him though and that’s what I like about him. Sal showed his personality during the football season when he could get everyone hyped up before the football games. He showed his confidence when he went to 6th grade camp and they had a dance. Everyone thought it was weird to dance with people but he just looked for the cutest girl and danced with her. That is why I love my friend Sal. He is not afraid to dance with someone and he’s not going to stop playing sports just because he has a disease. He keeps going on with life and that is what I like about him.

 Tom Szenderski-age 15

 I’ve done tons with Sal over the years. We go sledding in the winter, we swim in the summer, I beat him in FIFA soccer and then he beats me on the basketball court. We have spent birthdays together, pulled a few all-nighters, and gone to many football and basketball games; the list goes on and on. We do all these things despite his Cystic Fibrosis. So far Sal’s CF has never gotten in the way of the things we want to do, his CF has become a normal part of our routine when we hang out. There are times when I have to remind him to take his pills and he usually has to do his breathing treatments and his vest before we go somewhere, but we know this is necessary and is what is keeping him healthy. I am aware that at any point Sal’s CF could get worse and I don’t want that to happen. I don’t want the Cystic Fibrosis to get in the way of Sal’s future or the things we do together. We have had lots of great times and I want to have a lot more. I look forward to the next few years in high school together here at St. Francis, our graduations, our college years and maybe someday standing up in each other’s weddings. To make these things possible we need money for research to find better treatments and medications, or better yet, a cure for Cystic Fibrosis, which is why events like tonight are so important. I love Sal like a brother and I am committed to finding a cure.

The Phone Call

It was early August 2001, as I made my routine call to my mom to check in and see how she and the family were doing. The instant that she answered the phone I knew there was something wrong. I could hear it in her words as she said that she just got off the phone with my younger brother Rick.  It should have been one of my brother’s best days because just a few days earlier he became a father.  My nephew Sal was born on August 4, 2001.  The news that my mother told me was that Sal was diagnosed with cystic fibrosis. My heart just ached, I wanted answers to how this could happen.  Of course, you go through all the emotion: shock, upset, anger, and then you just start praying. Praying for a cure, praying to take the pain away. If you know my family and my sister in law’s family you probably would guess that we didn’t just accept the diagnosis and do nothing. We formed Sal’s Pals, a group of family and friends that are dedicated to finding a cure for Sal and others with this disease.  We organized our first dinner auction. And then another, and another.  We added casino bus trips, golf outings, wine tastings, and kids’ carnivals. We were on a mission and we weren’t going to stop until we had a cure.

And then,

The phone call … It was early afternoon on February 3, 2014 that I received a call from my sister in law Jenny, Sal’s mom.  Again, I could hear the sadness in her voice as she told me that Sal was just diagnosed with Cystic fibrosis – related diabetes (CFRD). My heart ached again, I wanted to somehow reach through the phone and hold Jenny as tight as I could. I started asking again how this can happen.  After all we have been faithfully raising funds for a cure.  The emotions were overwhelming.  It was like we took another step back instead of forward.

Well you guessed it, we kept on going.  Reaching out to our co-workers, neighbors, just about anybody that we knew to help us.  We knew we couldn’t do this alone.

I am writing this blog the day after a meeting with the Sal’s Pals committee.  We are only four weeks from our 14^th annual dinner auction.  Although they have created a medicine that treats the disease in the past few years, we are still not done. We still need to find the cure so that the next phone call…. “We did it, they have cured cystic fibrosis.”

With all my love ~ Aunt Vicki

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

You think I'd leave your side?

Has a song ever came on the radio and it instantly takes you to a time from your past or remind you of a certain individual? Any time I hear a Tom Petty song, I instantly think of a former boss. Depeche Mode’s “Personal Jesus” transports me to an awkward self at the 8th grade dance. And my personal favorite...I can’t hear “Shout” without thinking of Ricky Wedding.

I don’t remember the first time I heard Sade’s, “By Your Side,” but the first time I really listened to the lyrics was at a Sal’s Pals event several years ago. I also don’t remember who chose to use this song in the video, but I do know it wasn’t chosen by mistake.

This is the part of the blog where you stop reading and YouTube the song!

https://www.youtube.com/watch?v=C8QJmI_V3j4

How can you listen to that song, and not think of Sal?

Sal,

Although our visits are not as frequent as they once were….know this:

I am proud of the young man you’ve grown up to be!

I can’t wait to see what life brings you! (I secretly hope you become a teacher so your students can torment you the way you tormented me!)

Most importantly, I, along with every one of your “pals,” will never leave your side.

You think I’d leave your side baby? You know me better than that.

Until there’s a cure,

Wit

That Acquaintance...

I first learned of Sal’s Pals about five years ago from a then acquaintance of mine.  In 2011, I attended my first event, a wine tasting at the Pinnacle.  At that time, Cystic Fibrosis (CF) was something that I knew very little about, and I was unaware of the exciting progress that was being made toward finding a cure for CF.

At the wine tasting, I listened to Jenny Pinardo speak.  A local mom around my age, with a son the same age as my daughter Maddie.  I was so moved by Jenny and her husband Rick’s story, that I decided I wanted to join the fight to find a cure for Cystic Fibrosis.

Jenny told the story of a beautiful baby born to his proud parents.  Little did Rick and Jenny know that they were both carriers of genes that cause Cystic Fibrosis.  In 2001, Sal was diagnosed with CF.  Faced with the devastating news that their son would require daily breathing treatments, a lengthy regimen of medications, doctor visits, and a life expectancy under the age of 30, Rick and Jenny took action.  With the support of friends and family, Sal’s Pals was born.  A charity committed to supporting research toward finding a cure so that Sal, and others like him, can have the opportunity to live the long and happy life that they deserve.

In ten years time, Sal’s Pals has raised over a million dollars and Sal’s Pals is full of hope that a cure is on the horizon.  The median life expectancy for a CF patient has risen to close to 40, as a result of medications that are treating the genetic defect of CF and are changing CF patients’ lives, including Sal’s.  While the survival rate has improved, the fight must continue.

Sal is now a freshman at St. Francis, plays several sports, and is an inspiration to others with CF.  Thanks to warriors like Sal and all those who have contributed to finding a cure for CF, future generations will be able to breathe easier with long lives ahead of them.

The Sal’s Pals annual dinner auction is coming up on April 30 at St. Francis High School.  I will be attending, along with that acquaintance of mine, my now husband Chris, and over a hundred other amazing people who support this very worthy cause.  If you have never attended a Sal’s Pals or CF event, I strongly encourage you to join us.  Not only will you feel inspired, you will likely make new friends, and will feel hopeful knowing that your support is making a real impact, not only on lives today, but on future generations to come.

Until There’s a Cure,

Molly McNamee

"The days are long but the years are short"

I remember reading a quote somewhere that said, “The days are long but the years are short.” As a busy mom of four, this quote really resonated with me. This past fall was no exception as my husband and I sent our oldest off to college, another son started high school and the baby of the family boarded the bus to Kindergarten.  To say we were overwhelmed would be an understatement.  It truly seems like yesterday that I was forever stuck in the sleep deprived trenches of parenthood.  Those days seemed to have lasted forever. So how can it be that our life is now so different than the life we used to know?? Well, That’s how life is. We don’t realize on a daily basis, but it moves so quickly. 

Recently, I went to Jenny and Rick’s for our first Sal’s Pals meeting of the year.  It promised to be like so many other meetings where we tackle obstacles, bounce ideas off each other and brainstorm new avenues to ensure a successful event.  However, there was a different feel this time, an uneasiness you could say.  There we were, gathered in their living room planning our 14^th dinner/auction when Jenny and Rick asked us to go around the room and state why, we personally, felt like we should continue on.  This made me think back to how I became involved with Sal’s Pals.

Jenny and I were and were working together at St. Lukes Hospital and we were both anticipating the birth of our second child.  Each of us was expecting a boy and dreaming of who they would be and what they would become.  I delivered, Ryan, a healthy baby boy on March 3^rd 2001 and was filled with excitement when Sal was born on August 4^th.  My excitement was quickly replaced with confusion and fear when Jenny called to inform me that Sal was diagnosed with Cystic Fibrosis.  Having a son just a few months older, really made my heart ache for Jenny and Rick. I couldn’t comprehend how anyone could move forward after learning their beautiful baby had an incurable disease.  I quickly realized that I didn’t know my dear friend as well as I thought.

Jenny and Rick didn’t shake their fists at God, instead, they made the decision to be a part of finding a cure.  They built our team, Sal’s Pals, out of a determined group of family and friends and devoted their lives to educating themselves about this horrific disease.  They made the complicated medical terms their second language that they use them like professionals to educate the team they’ve built. We may not fully understand what all these terms mean, but we do fully understand how they affect Sal’s world and Sal IS their world.  So they fight. We fight together. It’s not an easy fight either. Raising money to find a cure for your child’s disease is not taken lightly. Jenny and Rick and so many members have made this their full time job, on top of their full time jobs not to mention the families that they are raising.  Dinners that feed hundreds of people, wine tastings, golf outings, casino bus trips, just to name a few, all need planned year after year. The daunting tasks of collecting donations, organizing volunteers, setting up and tearing down can really make for long days.  Days that probably seem to never end.  I could see it in their eyes, that night of the meeting, all these years in, that they’re tired.  Everyone’s tired. But Jenny and Rick shifted the focus of the meeting to Sal’s future and our mission statement and we were motivated as a team to continue on clinging to hope, prayers and miracles.

Sal is a handsome, hilarious, smart and witty young man. He is healthy despite the disease that lingers underneath.  He too fights alongside his parents and the team that is named after him. How can it be that it’s been 14 years??? 14 years since we learned of Sal’s diagnosis, over a million dollars raised and millions of laughs and memories that have been shared with our team. A team that is lead by two warriors who have taught the world what it is to love and to fight. The future is bright for Sal and the thousands of others with CF because of people like Jenny and Rick, who patiently and relentlessly give of themselves to find a cure. Though it can be exhausting, monotonous and at times uninspiring, they press on. Because, not unlike child rearing, the daunting days quickly reveal the beautiful years that have been dedicated to a miracle. 

Until there's a cure,
Angie O