A teen’s preppy tote carries hope for victims of rare bone disease

by Johanna Ginsberg
NJJN Staff Writer

Bones and butterflies are the design of choice for fashionable canvas totes at The Pingry School in Martinsville, especially among middle-schoolers. Designed by Tori Meyer, who begins eighth grade at the school in the fall, the totes are not simply a fashion statement.

Meyer designed the bags and other items with the help of the Martha’s Vineyard-based Vineyard Vines clothing company to raise money for FOP, or fibrodysplasia ossificans progressiva, a rare disease that progressively transforms muscles and soft tissue into bone. Researchers are aware of only 400 cases worldwide and estimate that it may affect about 2,500 people in total. Among these is Meyer’s friend and classmate, Whitney Weldon, who was diagnosed when the girls were nine years old.

To date, Meyer’s project has raised $8,000 for FOP. “I just wanted to do something to help Whitney,” said Tori, sitting in her New Vernon living room.

One of the most exciting parts of the project for the 13-year-old was receiving the first box of items. “That was so cool,” she said.

Sales have been brisk, although Tori and her mother, Marsha, were initially worried about the requirement that they purchase a minimum of 100 each of the ties, belts, and totes they ordered. (Still, the company agreed to sell them at the per item price usually offered for sales of 1,000.) Most popular were the apple green totes, now sold out.

Fund-raising for FOP has become something of a family tradition. Tori’s brother, Matt, held a skate-athon when he became bar mitzva that raised $6,000 for FOP; and her mother holds an annual luncheon that last year raised more than $30,000.

So Tori knew exactly what cause her tzedaka project would support as she began preparing for her bat mitzva, celebrated at Congregation Beth Hatikvah in Chatham the weekend of June 3. But how she would raise money was not at all clear to her — until she spied a Vineyard Vines canvas bag featuring the logo of her brother’s school, The Morristown-Beard School.

“I thought, ‘That’s really cool,’” said Tori. She got on the phone with the company. Not only was Vineyard Vines receptive; it turns out the Weldon family, also residents of New Vernon, had already called the company for custom ties to be given out at a June 12 golf fund-raiser for the disease.

Tori submitted images of a bone and butterfly, signifying hope for finding a cure for the disease. When the company sent back five proposed designs, “one was the instant winner,” said Tori, who then worked with the company to adjust the colors.

“It’s been really cool,” said Tori. “I didn’t think I could raise this much money.” Even more exciting for Tori was that in the midst of her fund-raising efforts, the one lab in the country doing research on FOP, at the University of Pennsylvania, found the gene that causes the disease. “Now I feel my project raising money could really help find the cure,” said Tori.

Totes, belts, and ties are still available in a variety of colors at catalogue prices. For more information, contact Tori Meyer.