Thank You 2015

Thank You 2015

Thank you all for being here on this beautiful Saturday morning. Thank you to all of the volunteers and sponsors, the participants and the spectators for coming again this year.

This past year flew by. We’ve all had a lot going on. Everyone has been busy with the many ups and downs life has to offer; the kid’s extracurricular activities, sweet 16s, graduations, weddings, illness, and some losses. And yet, I look out at this crowd and see that you have all made the time to show your support today. Thank you again.

Shwachman Diamond Syndrome, is a rare bone marrow failure syndrome for which there is no cure. For the past 12 yrs, my family and friends have continued to help me planning this event in order to raise monies for research into a cure. I have been so fortunate to have so many people ask if they could help in some way and it’s because of that, this event manages to come together so nicely.

The months of April, May and June are a complete blur and before I know it, it’s the night before this event and I am trying to sum up what insight I’ve picked up on about life and the many different twists and turns it offers.

Well, Dylan has appointed me as “the most annoying mom in the world.” That’s right, just like that overnight, I’ve become ‘that mom’. The mom of teenage boys.
It’s a job that some of you may already have experience in. It’s a job that has me hopping. I’m trying to balance life just like all of you. Sometimes, many times, I don’t have a clue as to what I’m doing. I’m making it up as I go along. There’s a lot of trial and error going on. The dialogue in our house is filled with, “ Do not speak to me that way”, and “Did he just say that to me?” and “Please don’t do that again”, to “Did he just do that again?” and then there’s the “I’ll do it in a minute” which always ends up with me explaining that “a minute is not “when I feel like it”. Let’s not even get to the eye rolling incidences. But fortunately for me, I have a family that helps me get through those times.

I’d to give a special thanks to my mother in law Carol. If it were not for her, I would be missing out on these moments. Her encouragement and dedication to finding a cure has allowed me to be that “annoying mom”. while in the background, she works tirelessly speaking with various researchers from around the world and reads through their grant proposals and gives me the cliff notes to them so that we could decide on which ones to fund.

Dylan continues to ask when are we going to find a cure and I continue to say we have people working on it every day. We are hopeful. And this is why I continue to do this event.

Thank you all again for being here and helping us to become closer to our goal of finding a cure. Hope to see you all next year.

Please remember: “Too often we underestimate the power of a touch, smile, a kind word, a listening ear, an honest complement, or the smallest act of caring, all of which have the potential to turn a life around.”– Leo Buscaglia