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As many of you probably know, my granddaughter Melanie Miller died when she was just 7 years old from a very rare disease called Cockayne Syndrome. Cockayne Syndrome is a devastating illness that causes developmental disabilities, loss of milestones, loss of vision and hearing, tremors and multiple complex medical problems. Melanie suffered from all of these and yet still remained an unbelievably happy, tolerant and extremely brave little girl. She had a magnetic personality and those who knew her were impacted by her.
There is an organization called The Share & Care Cockayne Syndrome Network that was formed to help support children who have Cockayne Syndrome and their families. Cockayne Syndrome is so rare, there are only about 200 diagnosed cases worlwide. Because it is so rare, there is very little public awareness and research being done. Share & Care has been instrumental in raising awareness around the globe and recently a research protocol has started at Boston Children's Hospital.
The 2008 Inaugural Butterfly Walk for CS is a nationwide walk to raise money for the Share & Care Network. The local NY walk is being sponsored by Team Long Island and is being held on Saturday, May 24 from 8:00am-11:00am. It is being held at Seamans Neck Park at 2700 S. Seamans Neck Rd in Seaford, NY.
Please help us to fight this terrible disease. Your participation or donation would be truly appreciated.
Help us honor Melanie. It is her legacy to be helping others, so it is our privilage to do this for her.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!