Saturday, October 3rd, 2009, we are hosting the 2nd Annual Butterfly Walk for Cockayne Syndrome. Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan. Our 4 year-old daughter, Avery, was diagnosed with this in 2006. 

 

Funds received from the 2009 National Butterfly Walk will enable The Cockayne Syndrome Network to continue its mission to support critical research into this devastating illness, provide educational programs, exchange of information, and efforts to improve the quality of life for children and families affected by CS.

 

Share and Care has organized a national fundraiser to continue their mission; we will be hosting the 2nd ANNUAL BUTTERFLY WALK for Delaware on Saturday, October 3rd, 2009 at Paper Mill Park (corner of Paper Mill Rd and Polly Drummond Rd.). The Walks starts at 12:00pm and registration/t-shirt hand-out begins at 11:00am. To show our appreciation and to celebrate, we will have a BBQ immediately afterward.

 

Please join my family in our commitment to help families and children living with this devastating syndrome. We can't thank you enough for your continued and meaningful support.