ourboys 5k 2009 and Batten Awareness Days

It must be that time of year again because here come the Hawkins emails!!!!   Seriously, THANK YOU for all that you have done to support our family and other families affected with Batten Disease.  Every moment of time that you devote, every dollar that you have donated in the past has been put to great use.  The Batten Disease Support and Research Association funds research projects to find a cure.  The organization also supports families by providing support programs including an annual conference, an equipment exchange, an education specialist, a nurse on staff, and a social worker to help our families navigate “the system”.  BDSRA recently hired a national director of development as well, to help us maximize our donations in this difficult economic time.  All this from a 23 year old 501(c)3 organization that was founded by a family in Spokane, WA who had 3 children with Batten Disease.  
Once again THANK YOU, THANK YOU, THANK YOU!!!!!!!!
By now you are asking yourself why am I getting this email?   Please mark your calendar with the date Saturday June 6th for the second annual ourboys 5k at Harris Road Middle School in Concord.  This years event will feature the 5k Run/Walk at 8am, 1 Mile Fun Run at 9am, children’s games and if the weather cooperates, a car wash.  If you would like to run or walk please register online at http://www.sportoften.com/events/eventDetails.cfm?pEventId=3925.   If you would like to volunteer some time making the event a success please contact our volunteer coordinator Andy.Brown@wachovia.com.  Volunteers will be needed to set up, register runners, direct traffic, manage the course, run the children’s games, wash cars, and clean up. We will also have opportunities to help in the week or so leading up to the race.  
Our event is being held in conjunction with National Batten Awareness Days on June 5,6,7th.  The BDSRA  national fundraising committee is sponsoring this weekend with a promotion giving away reusable grocery bags with the BDSRA logo and website.  Families, friends, and coworkers are banding together with local merchants to provide these bags to their patrons with additional information about the BDSRA.  If you would like to donate some time and know a business or merchant that would be willing to allow this please contact us so that we can make arrangements to get the materials to you.     
Chris, Wendy, Brandon and Jeremy


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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