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Kids/Family
Sunday TIME: to
a Scenic Motorcycle Ride, with a Classic Car Show, Vendors, Games, Live Music and BBQ.
Avery Rose was diagnosed in 2010 with CDKL5, a rare genetic mutation, which is lacking a protein essential for normal brain development. Presently, there are only about 500 identified children in the world and our four-year-old Avery is the only child diagnosed in Connecticut. Avery suffers from: daily seizures, does not walk, or talk, has impaired vision, and does not use her hands for function. Avery is a very happy, content and loved little girl who has deeply touched the hearts of many. We have hope that with the evolution of: genetics, medicine, and science, researchers will be able to further understand the mechanisms of this gene and love to be able to discover an effective treatment and/or a cure.
100% of the proceeds are tax deductible through our partnership with Middlesex County Community Foundation, and all monies raised will go to IFCR/International Foundation for CDKL5 RESEARCH, a 501c organization.
teamaverycdkl5.com
https://www.facebook.com/HopeLoveCureRide or more info call 860-532-0746
Location:
Clark Memorial Field (Firemen's Field)
210 Elm Street
Old Saybrook, CT
Cost:
Free
Contact:
860-857-5300
www.oldsaybrookfire.com