From preservation societies to educational foundations to healthcare organizations, Jane Locke’s charitable résumé runs long. But her success with fundraising for large national charities left her frustrated. Why did they need to throw swanky volunteer recognition parties? And why were the funds she raised locally distributed across the nation, rather than staying in the low country of South Carolina?
“So much money goes into administration,” Locke says. As a volunteer, “you have a right to ask, ‘What do you do with your money?’”
Not hearing a satisfactory answer, Locke and a group of two dozen other like-minded individuals—many of whom were local firefighters—decided it was time to start their own charity in 1987. Their mission: to help the families of children with birth defects cope with financial burdens. And that’s how Carolina Children’s Charity was born. Locke helped the charity obtain 501(c)3 status and has since held every possible position on the board, including 18 years as president. The mother of two daughters unflinchingly refers to the charity as her “third child.”
The truth that spurred her charitable passions is as ironic as it is profoundly sad: the stillborn birth of her third child—a son, who was the fraternal twin of her perfectly healthy, younger daughter.
“Had he survived, he would have had one arm and one leg shorter than the other,” Locke recalls tearfully. “It definitely would have been a big fight for him. Maybe psychologically that’s one of the reasons I’ve been so involved.”
Since 1987, CCC has distributed more than $3.7 million to offset healthcare costs for thousands of children. The organization collects money mainly through two major events—a telethon and a 5K walk/run—and uses the money to fulfill grant requests from families in need. The organization pays vendors, medical providers, and pharmacies directly, rather than sending reimbursement checks to families.
The largest grants are in the thousands of dollars, often covering a wheelchair or an uninsured child’s diabetic supplies for the year. The smallest grant Locke can remember was around $9, to cover a child’s medical alert bracelet. The charity works closely with medical providers to negotiate lower prices on behalf of the children, who the charity calls “diplomats.”
Whitney Reafler’s daughter Dori, 6, is a diplomat for CCC. She has a genetic disorder called CASK Gene Mutation, which is so rare that she is one of only about 35 known cases worldwide. Ever since Dori was six months old, the charity has been there to help pay for everything from prescription baby formula to a wheelchair and leg braces. They also helped offset costs related to visits with medical specialists all over the country.
The charity now helps Dori attend music therapy, which Reafler says has improved her communication skills. Sometimes CCC can arrange for the distribution of highly valued hand-me-down equipment. When one child outgrew the therapeutic tricycle he’d gotten through a CCC grant, Dori was able to start using it. Her ability to ride along her 10-year-old brother instead of trailing him in her wheelchair is priceless. “Now we can go for a bike ride as a family,” Reafler says. “That just opens up so many doors for us.”
Even though Reafler and her husband work full time, CCC has reduced a major financial burden. “Even with Medicaid and our primary insurance — which is a very good insurance company — there are so many things that fall through the cracks, that are not covered by insurance,” Reafler says. “The charity steps in for those things.”
Around the time Dori was learning to walk, the family put together a group named Team ADoriable to raise money in the annual run/walk event. After navigating the 5K in her wheelchair, the team stopped just short of the finish line so Dori could cross it using her own two feet. “We let her walk across and Jane teared up as she was watching,” Reafler says. “Jane’s not family, but yet she takes joy in every single thing that we report to her about Dori’s success.”
Two years ago, Reafler and her husband joined the board, and they haven’t looked back. Their increased involvement has only bolstered the respect they have for Locke’s multitalented commitment. “Jane is not afraid to push her sleeves up and move furniture, or fold pamphlets, or sweep the floor,” says Reafler. “But then she can put on a beautiful suit and represent the charity before some of the really influential people in our community. Not a lot of people can do that.”
As the only founding member who’s still involved with the charity every day, Locke is always looking to bring in more volunteers. She also runs a tight ship; board members are required to attend monthly meetings and follow requirements intended to prevent conflicts of interest. “You’ve got to be a worker bee,” Locke tells potential board members with a smile. “If you’re getting on this board to have something to put on your obituary, you can forget it.”