As many of you know, my granddaughter, Bella DiLuvio Brock was diagnosed with Cockayne Syndrome (CS) at the age of 9 months. CS is an extremely rare and devastating disorder for which there is currently no treatment or cure. (See link to the left.)
The Share and Care Cockayne Syndrome Network is a lifeline for families of children with CS. The information, resources and emotional support they provide is invaluable to parents. The Cockayne Syndrome Network helps promote awareness of CS among medical professionals, provides funding for research into CS, and holds annual conferences for families and researchers. The Network is staffed entirely by volunteers.
On behalf of Bella and other children with CS, we ask for your support of this organization and the research they help fund. Please sign up as a walker/runner for our California Butterfly Walk, Saturday, October 23rd at Spring Lake Park in Santa Rosa, and make a donation to the network. The route is 2.3 miles (or 4.6 if you’d like to do it twice). Registration begins at 8:30 AM and the walk starts at 9:00. Water and snacks will be provided.
We are also hosting a post-Walk Celebration and Silent Auction at the Chrome Lotus Night Club, 501 Mendocino Ave. in Santa Rosa from 6:30 to 9:30. Come enjoy food, wine, live music, and bid on goods and services donated by our local merchants. Entrance is free to Walkers and Volunteers. A $5.00 donation is requested from all others.
Register to walk or run: click on the link: "Join this team" and follow the registration directions. Be sure to join TEAM BELLA BROCK.
Make a donation: You can make a donation/sponsor me by following the "sponsor me" directions here on this page. Checks can be made out to the Cockayne Syndrome Network.
Donating through this website is simple, fast and totally secure.
Thank you for your support.