Team Long Island's Fundraising Page
TO REGISTER FOR THE TEAM LONG ISLAND WALK
E-MAIL YOUR NAME, PHONE # & T-SHIRT SIZE TO:
EITHER
MELKATEOL@GMAIL.COM OR
MARIALAZ@OPTONLINE.NET
Hi!
Welcome to Team Long Island's fundraising website for the 2008 Inaugural Butterfly Walk for CS!
Team Long Island was formed because there are 5 families from Long Island who have children with or have lost children to Cockayne Syndrome. Cockayne Syndrome is a very rare genetic illness, with only around 200 children diagnosed worldwide… can you imagine that there are 5 families affected, right here on Long Island? Because CS is so rare, there is little research and awareness to speed curative or comfort measures for these beautiful, social children.
Cockayne Syndrome (CS) is a rare neurodegenerative disease that causes developmental disabilities, loss of major milestones and an extremely shortened lifespan in children. The Share and Care Cockayne Syndrome Network is a worldwide support organization for families of children with Cockayne Syndrome. All funds raised will go to Share and Care to help these families and to support CS research and raise public awareness. Share and Care is a 501(c )(3) organization, all donations are tax deductible.
Team Long Island is hosting the NY 2008 Inaugural Butterfly Walk for CS. It will be held on Saturday, May 24, 2008 from 8:00am to 11:00am. The walk will take place at the Seamans Neck Park in Seaford, NY. The directions are: SOUTHERN STATE PARKWAY OR NORTHERN STATE PARKWAY TO (SEAFORD) SEAFORD OYSTER BAY EXPRESSWAY SOUTH (135) TO MERRICK ROAD EAST. GO 6 BLOCKS AND MAKE A RIGHT TURN ONTO SEAMANS NECK ROAD AND FOLLOW SIGNS INTO PARK.
Please help us in our fight to raise awareness, help the children and their families and fund much needed research to find treatments and a cure! Your donation and participation can help!!!
Thank you!
The Miller Family (Melanie)
The Cahill Family (Scott)
The Greco Family (Katie)
The Lazazzaro Family (Samantha & Jake)