ourboys 5k update

Thank you to all the volunteers and participants who made Saturday’s event a success. Especially we would like to thank our planning committee members for their time and input. Andy Brown for coordinating volunteers and anything else he would offer to help with, Jeff McGonnell for his Race Director expertise, Monica Hughes for making the Registration table run smoothly, car wash duty and valuable insights. Mike Carneglia coordinated our traffic control and relationships with Concord PD and FD, Pam Barnard and Tonya Davis for the children’s games! Laura Brown for being a data entry champion, and her input. I know I have missed someone somewhere and I hate that but please know that we are very grateful for the support that has been shown by the entire community for our family and for other families dealing with Batten Disease. We also would like to thank WR Odell Elementary and Harris Road Middle Schools for allowing us to use their facilities and for the support of the students and staff!

We ended up with 143 runners and walkers for the 5k and a great crowd for the 1 mile fun run. 5k results are posted on the registration site at http://www.sportoften.com/events/eventResultsList.cfm?pEventId=3925. I have pictures posted on our website photopage at http://www.ourboysjourney.com and my facebook page. I have been receiving pictures from others as well and will post them as I get them. Two personal highlights that I would like to mention. I was amazed when I saw Ian Smith pushing my son Brandon in his wheelchair to a second place finish overall. Brandon is a load at 150 lbs and the wheelchair is not designed to run the race that Ian took it on. The look on Brandon’s face and the way he was holding his arms out pretending to fly as they made their way to the finish line will be something that I will never forget. Thank you Ian!!!! I also will not forget the pride that Jeremy carried with him for several days after finishing the 1 mile in second place overall. Unfortunately I missed him crossing the finish line, but there are a couple of great pictures of him reaching the end of the race. These are memories that I will cherish in the years to come.

The children’s games were alot of fun, the kids enjoyed the fire truck and the car wash was a success as well!!!

Our preliminary totals estimate a fundraising total of approximately $15,000 again this year!!! Thank you to all donors, please remember that many companies have matching gift programs. It’s not to late to donate if you would still like to, just click on the donate now button on this page, go to http://www.bdsra.org or send a check to us at 9630 Laurie Ave NW, Concord NC 28027 payable to BDSRA.


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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