24 Hours Of Loopy for a Cause

Mission:
Each year the members of the Batten Disease Support and Research Association (BDSRA) do their part to help build public awareness to a rare but devastating disease.  BDSRA is holding its annual Batten Disease Awareness Weekend, June 3-5, 2011.  This disease may not be well known, but its effects on a family can be seen in numerous cities and towns around the country.  Batten disease is a genetic neurological disorder that affects children and adolescents. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease become blind, bedridden, and unable to communicate. Presently, there is no effective treatment and the disease is always fatal.

The Event:
The Southeast Chapter of the Batten Disease Support and Research Association is putting on a new event, the 24 Hours of Loopy for Batten Disease Awareness.  Beginning Saturday June 4, 2011 at 11am and finishing 24 hours later on June 5^th, Davidson resident Jeff McGonnell plans to run for 24 hours around the Green in downtown Davidson in order to support Batten Disease Awareness Weekend.   Mr. McGonnell, an ultra marathon runner for over 20 years is a family friend of the Hawkins family in Concord, NC.  The Hawkins brothers (pictures below) Brandon age 13 and Jeremy age 9 have the Juvenile form of Batten Disease.   The event will include live music, cotton candy, games and fun for kids as well as a guy running around and around and around the Green for 24 hours (expect him to go 100+ miles).

Research is the key to finding a cure, and funding for this research is essential.  This events primary goal is Awareness in the community but we are also looking to raise funds to go toward BDSRA’s ongoing research.

We want to spread awareness about this terrible disease and would like to invite you to join us as a sponsor for this great event - please contact me if you'd like to help

Please put this on your calendars – if you want to come by on the day of the event, you can run a few loops with me. On the day of the event we’ll have props, costumes and silly things set out on a table – if you want to come by and pay for me to run with a rubber chicken on my head this will be your lucky day.

Contact for more information:

Jeff McGonnell - 704-907-6758

JJmcgonnell@gmail.com

More about the Hawkins Boys & BDSRA –

http://ourboysjourney.wordpress.com/

http://www.bdsra.org/

Jeremy

Brandon