First "Avery Rose Hope-Love-Cure-Ride" This Sunday!

This Sunday, Old Saybrook will host a Hope-Love-Cure-Ride event to benefit Avery Rose, a four-year old who was diagnosed in 2010 with CDKL5, rare genetic mutation, which is lacking a protein essential for normal brain development. 

The event will feature live entertainment, food, a Classic Car and Bike Show, Vendors, Motorcycle Field Trails and more. Proceeds from the event will go to IFCR/International Foundation for CDKL5 RESEARCH. 

For more information, check out the following letter from "Team Avery," who is organizing the event!

The following message was provided by Clinton Resident Paula Tautkus, a committee member of the event:

Dear Community Friends and Businesses,

We are pleased to announce our 1st Avery Rose “Hope-Love-Cure-Ride” Sunday, June 2, 2013. The Avery Rose Ride will be a fun filled day for a great cause….

The event is to be held at Firemen’s Field in Old Saybrook, CT and to include a scenic coastal 50 mile 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 we would LOVE to be able to discover an effective treatment and/or a CURE!

We hope that you would consider being a part of our special day by either becoming a sponsor, vendor, volunteer or just participate in this special day’s events.

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.

Ms. Avery Rose is truly our “Silent Angel”. We feel very blessed for her presence in our lives and we are very grateful for our community’s ongoing love and support. Thank you for your consideration.

Sincerely, “TEAM AVERY”

Ride registration at 9:30 AM and the ride begins at 11 AM and returns around 12:30 PM at Fireman's Field, 210 Elm Street, Old Saybrook. Rider: $25, Passenger $10, General Admission: $15. Open to the public at 11 AM. For more information call 860-532-0746.