Long Branch, NJ...
|
September 30, 2008 -- As I opened my eyes at 6 AM on Saturday September 20th, I knew that today we were going to raise awareness for Chiari and/ or Syringomyelia. As I got in the car to go to the site I started to feel a little nervous. I just kept saying to myself this day will change the lives of many people dealing with the disorder. As I arrived to the site I had three of my volunteers waiting for me as I put the signs with the purple balloons out on the street for those who weren’t familiar with the area. I also wanted to draw an outside crowd so the signs helped. As we started getting set up people were taking a gander at the tables and our poster board that my wife Robin had put together. We got everything in order just in time as the participants started to arrive. As I started to get the kids over to the face painter I was tapped on my shoulder by a woman that I had been speaking with for a few months, but had not had the opportunity to meet in person. I was able to go and meet most of the people that were there for themselves or for their family member. The people were coming from all over New Jersey so I had my registration time from 8:30 to 10:00 AM. As 10:00 approached I noticed a few faces that were missing so I made a brief announcement at 10:00 letting everyone know that we are here for a great cause and the awareness is important in telling your friends or family about CM/SM. We gathered up all the participants around 10:15 and I thanked everyone once again for their time and their ears for listening to what we were there to do. I began the walk with my daughter Caitlin and 2 of my nieces Sara and Amy. We started our journey down the boardwalk with clear blue skies and a nice breeze just to remind you that you were walking along the Atlantic Ocean. As we were walking people were stopping and asking what was Chiari and what were we out doing. It happened all along the walk with different people talking to bystanders wanting to know more about Chiari and Syringomyelia. During the walk we had a few volunteers stay at the tables for people walking by. We had one gentleman approach the table look at the sign and say “that’s what I have”. My wife talked with him briefly and was given my information for next years walk. As we turned back after 1.4 miles we had the same thing going back. That would be people stopping and seeing all these people with the same shirts walking together . The walk took about thirty minutes, but it wasn’t about the time or length of the walk. It was about seeing everyone’s family and friends out supporting the cause. As we all returned to the starting point there was a raffle that I had planned for door prizes. We were able to put together 19 items to draw numbers for. It was to show my appreciation for everyone coming to the walk. I picked back up the microphone and grabbed all the children at the walk. I had them each pick a number and try and read it if not I would call the numbers. It made the drawing interesting and it was funny trying to hear some of my nieces and nephews trying to say the numbers. All 19 items were gone and I still got some sounds from the crowd wanting more. That brought me to next year, as I discussed our plans for the site location. We had over 100 people come to the walk. I was hoping that we could double the number by next year. I was able to talk with most of the participants, but there was a lot going on and I saw chiarians talking to one another which made my day. Once again I thanked everyone today for coming and said my goodbyes. Today was one of the best days of my life since I was diagnosed in 2000. Most of the people there with CM/SM have been keeping their stories to themselves. This walk has put a different outlook on how we deal with the disorder. I talked with several people who have never met or talked with anyone who had Chiari and/or Syringomyelia. I was honored to represent New Jersey and having three months to put the walk together gave my wife Robin and I high hopes for next year. As we will have a full year to plan and I already have a group to volunteer for next year’s walk. I would like to thank Conquer
Chiari for putting this event together and giving me the opportunity to
represent them. I had the time of my life-------and it’s only just begun
|
