Saturday, May 25, 2013

Great Strides 2013

This past weekend was the Great Strides walk!  The walk is the biggest fundraiser benefiting cystic fibrosis and is held all across the United States with over 200 walk sites.  I heard at the walk ,the Cystic Fibrosis Foundation (CFF) goal this year across the country was $42 million.  I want to explain that cystic fibrosis gets very little government funding  and one of the reasons behind that is cystic fibrosis is considered an “orphan disease”.   So we rely solely on the generous donations from individuals, small businesses, and corporations to help find a cure.  Today, cystic fibrosis therapy and medication has come a very long way in these last 20 years and we have the CFF to thank for pioneering these advancements.  The CFF has many drugs in its pipeline and there are drugs/therapies that I am benefiting from because of the CFF’s dedication to finding a cure. 

As for the walk, it was one HOTTT day.  The temperature was well over 80 degrees so that meant Alayna was staying home : (  I really wanted Alayna to come on the walk but I knew it was way too hot for her.  I was so excited to have her wear her personalized shirt that Maria made.  Next year, she will be walking right next to her daddy though.  I cannot wait! 

I have been attending this walk site for now well over 10 years and every single year there are more and more people which is AWESOME.  More people equals more money raised.  I can still remember 10 years ago this walk site was raising around $30,000.  Last Sunday, the goal was to raise $123,000.  When we finished the walk, they said the total raised was $121,000.  Woo hoo! 

My team had a great time this year.  We raised a record amount of $1,695. I am so blessed to have a wonderful family and friends who want to see a cure for CF one day. My team included Maria, my mom, my friend Tom, and my friend Jason and his wife Emily and their daughter Katie.  As always, I have a wonderful family including Maria’s side of the family who always supports me on the walk and I cannot thank them all enough for how much money they donate every year.  This year my friend Jason, donated money at Christmas time to the CFF.  Instead of buying gifts they decided to donate money to various charities.  The CFF was on his list and I cannot say enough about your kindness and generosity Jason! Not only are you my friend Jason, you have listened to me talk about CF and you also were there to provide a positive mindset when Maria and I were going through IVF.  I also want others to know that you wanted to actually learn more about CF and checked out a book at a local library on CF.  Not many people I know would actually go to a library and read about their friend’s disease. 

My friend Tom has been going on the Great Strides walk for a few years now and it is always great to have him there.  This year he decided he was going to do something very generous for me and for all of us cysters and fibros.  Unfortunately, Tom’s mother passed away and in the obituary he wanted people to donate to the CFF in lieu of flowers.   This was beyond a gracious gesture as his mother had no ties to the CFF at all.  I was very surprised that people donated close to $200 through this in lieu of flowers.   Uncle Tom (uncle Tom is what we call Tom now in our house) THANK YOU for being a great friend!!!

We all had a great time walking our 10K walk and we even finished in record time, under 2 hours!  I am so blessed to be surrounded by amazing people who care about adding tomorrow’s to my life.  If I did not have such a loving wife, family, and friends my life would truly be incomplete.  As for the Cystic Fibrosis Foundation, I cannot say enough about their drive and dedication to make these two letters CF one day soon stand for CURE FOUND.




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