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The 2nd annual Butterfly Walk is a walk-a-thon event aimed at raising
funds for and awareness of Cockayne Syndrome. There are currently several
locations across the United States that are taking place in this year's walk.
Some of those locations include Arizona, Delaware, Florida, Montana, New Jersey, North Carolina, Rhode Island, Tennessee, Texas, Utah, and Virginia.
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.
Derick was only recently diagnosed but the Share & Care network has given us more information and support than our local doctors could. This disorder is extremely rare and can often go undiagnosed. With the help of your funds we hope to increase support and awareness of Cockayne Syndrome.
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 & support all centered around CS.
With the money that was raised last year, Share & Care was able to help pay for the retreat in Nashville and also for this year in Washington, DC. They are also using the money to pay for the first scientific conference focused only on Cockayne Syndrome, this September in Boston, Massachusetts which will include 40 researchers from around the world and a few families. Share & Care is an all volunteer organization -- no paid employees.
The 2nd annual Butterfly walk will be held on Saturday October 3rd, 2009 at Kiwanis Park Ramada #8. Address is 5500 S Mill Ave in Tempe. Please Register by September 24th, 2009 so we know how many people can attend. Registration starts at 8:30 AM. Walk begins at 9 AM. For any other information, Call Ryan @ 480-235-1922 or Andrea @ 480-236-5831
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