My son Nathan was recently diagnosed a few months ago at the age of 4 with Cockayne Syndrome Type II.

Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, premature aging, microcephaly, sensitivity to sunlight and developmental delays just to name a few. These children have a shorten life span due to the multiple complex medical issues (average of 4 - 7 years).  There are only 200-300 children in the world with this rare genetic syndrome. 

The Share and Care Cockayne Syndrome Network is a 501(c)(3) worldwide support organization for families of children with Cockayne Syndrome. This organization provides much needed support to children and families dealing with Cockayne Syndrome.  Its goal is to also raise awareness and support medical research.  

The 2nd Annual Butterfly Walk is a walk-a-thon event aimed at raising funds for Share & Care Cockayne Syndrome Network.

The walk in Virginia will be held on Saturday October 3, 2009 at the Fairfax Corner Shopping Center, in Fairfax, Virginia.  The start of the 2 mile walk will be on Grand Commons Avenue in the center of the shopping center.  

Please Register by September 24th, 2009.  Walk day registration starts at 7:30 AM, and the walk begins at 8:30 AM.  

To join Nathan and our family at the Virginia walk, please register at

http://www.firstgiving.com/cockaynesyndrome  

If you have any questions contact:
Karen Prante
at (703) 815-0727 or kprante@verizon.net.

 

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