Thursday, March 24, 2016

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!

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

Monday, March 7, 2016

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

Tuesday, March 1, 2016

"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 14th 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 3rd 2001 and was filled with excitement when Sal was born on August 4th.  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