Welcoming in 2011

Thanks to everyone who follows this blog and for all your support in 2010 and previous years.  We are excited about 2011 and what the future may bring, including a cure for Batten Disease.  For the first time ever, there will soon be clinical trials underway for three of the most common forms of Batten Disease.  Thanks to all who have donated to BDSRA, participated in and volunteered at our fundraisers, and most importantly for all the prayers along the way!!!!!

If you are in the Charlotte area please mark your calendars for several different events coming up that we support and wanted to make you aware of.

Saturday January 29th at 9:00am is the Upgrade Lifestyle 5k at Birkdale Village in Huntersville.   A portion of the proceeds will benefit Batten Disease Research with a big thanks to Sarah Hart at Upgrade Lifestyle, Inc http://www.upgradelifestyleinc.com/ !!!

Registration is now open at http://www.sportoften.com/events/eventDetails.cfm?pEventId=6320.

Saturday March 19th at 9:00am is the 2nd annual Run the Creek 5k in Highland Creek.  Online registration at http://www.setupevents.com/index.cfm?fuseaction=event_detail&eventID=1569.  This event benefits Garrett’s Wings www.garrettswings.org a Charlotte area non profit foundation which provides non medical support to families with terminally ill children.

Saturday May 7 at 7:45am is the 5th annual ourboys 5k at Harris Road Middle School in Concord.  Online registration is open at http://www.sportoften.com/events/eventDetails.cfm?pEventId=6343.  Please contact us at chawk328@live.com if you are interested in sponsoring the race, being a vendor or volunteering on race day!

Also wanted to make you aware of a couple of events promoting Batten Awareness.  Batten Awareness weekend is June 3-5, 2011.  Locally our friend, ourboys 5k race director,  and ultra marathon runner extraordinaire Jeff McGonnell will be running the green in downtown Davidson from 11am Saturday June 4 until 11am Sunday June 5 to help promote awareness.  Jeff has good heartedly agreed to don some unusual props of your choosing or your company’s tshirt or hat  if you are willing to pledge some money to BDSRA.   Our goal for this is mainly to create some media buzz and awareness so we are not really billing this as a fundraiser, but sure will be fun to watch Jeff run himself in circles.  For those who are not familiar with downtown Davidson one lap around the green is approximately .10 miles, just enough to make you Loopy…….

Speaking of ultra marathoners, you are not going to believe this next Awareness event.  Noah Coughlan is a family friend of the Allio family in Vacaville, CA.  Noah grew up with Catie and Annie Allio who have Juvenile Batten Disease.  Noah will be running across the country from Vacaville CA on March 4, 2011 reaching Jacksonville Fl on Saturday July 9, 2011 to help raise awareness!!!!!!!!!  Follow his journey at http://site1.battenjourney.com/.

Please take a moment and share this with your friends and family by clicking on the links below!!!!


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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