Click this link to donate to SCCS or you can select a Team or individual to support. http://www.firstgiving.com/team/302268
Join Team Abriella in the 3rd Annual Cockayne Syndrome Butterfly Walk to raise awareness, educate and generate funds for the Share and Care Cockayne Syndrome Network.
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.
This syndrome affects 1 in 500,000 children. Abriella was diagnosed with the most severe type of CS, which has a life expectancy of 4-7 years. Abriella is the only known living child diagnosed with this syndrome in the Houston/Katy area.
The Butterfly Walk brings together people to help raise awareness of this disorder, everyone from friends and family to teachers and co-workers. This walk raises funds for research & supports all centered around CS.
The walk will take place at Bear Creek Park on Saturday, October 3rd at 9:00 am. Packet Pickup will begin at 8:30am. Please park at the tennis courts and you will locate our packet pickup table near the restrooms. The walk will be 1 loop around the jogging trail, which is approximately 2 miles. Please ensure you register online, request your shirt size, make a donation and attend the walk. To be eligible for a walk tshirt you will need to register by 9/17/15 and be present at the walk. If you have any questions, please contact Alejandra at email@example.com
For more information please visit https://www.facebook.com/AbriellaButterflyJourney