May is National Neurofibromatosis (NF) Awareness Month, and one local family is doing its part to spread the news about this relatively common condition. “Sweet Tea for Sophie” stands will be popping up on May 6th with proceeds benefitting the Children’s Tumor Foundation.
David Nelson of Mint Hill says, “1 in 3,000 people have neurofibromatosis, yet we hear so little about it. We want to change that.” He and wife, Shanna, have three children: Caleb, Liam, and Sophie. Sophie was diagnosed with NF1 a couple of years ago.
When Sophie’s big brothers heard the news, they decided to set up a sweet tea stand and collect donations for the Children’s Tumor Foundation, an organization that seeks a cure and treatment options for NF. In 2016, friends and family across the country set up sweet tea stands as the Nelson family tried for the Guinness Book of World Records for “Most sweet tea stands on the same day for a cause.”
“It was incredibly moving!” Shanna exclaims. “Before we knew it, our Sweet Tea for Sophie Facebook page was getting picture after picture filled with happy, smiling faces at sweet tea stands all across the country. That day we finished with 38 stands in 7 different states, and over 20 different zip codes.”
This year, the Nelsons will host a stand at Pelican’s SnoBalls starting at 12:00 noon, and the Mullis family will have a stand again at the corner of Happy Hollow Drive and Wilgrove-Mint Hill Road from 11:00 a.m. until 2:00 p.m.
Also, six area Charlotte McAlister’s Deli restaurants will donate a portion of every sweet tea sold on May 6th to the Children’s Tumor Foundation. “We reached out to McAlister’s because we love their Sweet Tea, maybe even more than ours,” Shanna says. “They have been so generous. That has been one of the greatest gifts of this whole experience. We’ve met more of our neighbors and feel more of a sense of community than we ever did before – from local businesses that let us host stands with them to members of our community spreading the word about our efforts better than we ever could. It’s heartwarming.”
Sophie continues to be watched closely by her team of doctors at an NF clinic in Washington, DC. “As she grows, we are certain that she’ll ask more questions as she starts to notice some of the features of NF that she has that some of her friends might not,” Shanna says. “Overall, we feel good about where she is at. We’ll always worry about how it may progress as it is a progressive genetic condition, but we’ll take it day by day, and enjoy this life we have together.”
While David and Shanna hope to host a regular sweet tea stand every May, people can host a stand at any time. Their boys, Caleb and Liam, will open up their front yard with a couple of gallons of tea and a few cookies. But David says that this month is important to families affected by Neurofibromatosis. “Landmarks across the world will be lighting up blue in May for NF Awareness,” he says. “In Charlotte, the Duke Energy Building will be lit in blue and green on May 1st.”
Click here to register your stand for free. And you can follow on Facebook (SweetTeaForSophie) and Twitter and Instagram (@SweetTea4Sophie). The Nelsons are also more than happy to answer questions at firstname.lastname@example.org.