Island Community Rolls Up BIG for Kleefstra Syndrome

This holiday season, the people of Marco Island, Florida – young and old – are living the ethos “it’s better to give than to receive.”

More than 300 residents pedaled in a bicycle poker run called the Tour de Taverns on Dec. 4, raising $34,000 for IDefine. Meanwhile, high school students at the Marco Island Academy partnered with a local restaurant to raise another $900, adding to the $1,600 they had already raised selling baked goods and Kleefstra Syndrome awareness bracelets.

Residents of the small barrier island in the Gulf of Mexico about 20 miles south of Naples were made aware of Kleefstra Syndrome by Marie Lynn and Ray McChesney, the grandparents of 4-year-old Wynne Lockwood, who has KS.

Marie Lynn and Ray retired to Marco Island 18 years ago and have spent much of their time volunteering for numerous organizations and causes. When Marie Lynn approached Tour de Taverns organizer Jimmy Boylan about doing the event to benefit Wynne and IDefine, he was all for it.

“Everybody on the island knows Marie Lynn and Ray; they’re very popular,” said Jimmy. “The event couldn’t have been better. We had a record 317 riders and raised double the funds of our previous record. The fact that Wynne was able to be at the event and people could meet her was huge. Especially, with a face like that, she really tugs at the heartstrings.”

Wynne’s family, the Lockwoods, traveled from their home in suburban Detroit to attend the event and were blown away by the reception.

“Marco Island is clearly a tight-knit community that knows how to have fun and is passionate about helping others,” said Maria Lockwood, Wynne’s mom and the McChesney’s daughter. “Weeks later, we are still recounting the many warm conversations we had with the people of Marco and retelling stories of their generosity. We cannot thank everyone enough for embracing our family and the KS cause.”

Ray added, “This is why we live on Marco Island. The people are unbelievable.”

During their trip, the Lockwoods also made it a priority to meet and thank the students at Marco Island Academy, who learned about Wynne through Marie Lynn, who advises the Key Club.

“The students at MIA were outgoing, friendly and engaging,” said Maria. “Wynne loved taking selfies with them and getting a chance to thank them in person. Their compassion and inclusiveness were inspiring. The entire community should be proud of these students.”

The money raised from the Marco Island community will soon be invested in KS research — and that’s a gift that will keep on giving.