Truckers Spread Message of Niemann-Pick Awareness

By Jacob Savage

Published August 05, 2005, issue of August 05, 2005.
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With their stereotypically gruff demeanor, truck drivers are not often known for their charitable efforts. But in Fort Atkinson, Wis., truckers are playing a key role in raising public awareness of Niemann-Pick disease, a debilitating genetic disorder that often kills its victims before they reach adulthood.

W & A Distribution Services, a trucking firm based in Fort Atkinson, is raising awareness of Niemann-Pick through an unusual approach: by putting up ads about the disease on the company’s trailers. Since 1998, two of the firm’s trucks, outfitted with information about Niemann-Pick, have crisscrossed the country, educating the public about the disease.

With only about 1,700 cases diagnosed worldwide, Niemann-Pick often falls below the radar; this lack of public knowledge is one of several obstacles that advocates for victims of the disease must overcome. There are three different forms of Niemann-Pick. Types A and B, most often occurring in Ashkenazic Jewish populations, are the results of a recessive genetic enzyme deficiency. Children with Type A Niemann-Pick usually die by the age of 4 because of severe neurological damage.

Those with Type B Niemann-Pick can survive into late childhood or early adulthood. They suffer from enlarged livers and spleens and often have respiratory problems. Mild retardation and the delayed development of motor skills are symptoms of Niemann-Pick Type C, common among Nova Scotians of French-Canadian descent.

For John Andersen and Steve Wiesmann, the owners of W & A, Niemann-Pick hit close to home; the National Niemann-Pick Disease Foundation is based in Fort Atkinson, and Andersen and Wiesmann both knew Gary and Barbara Vorpahl, whose daughter, Stacy, had the disease.

In 1998, Andersen approached the Vorpahls about putting Niemann-Pick ads on W & A’s trailers. The Vorpahls were enthusiastic. Gary Vorpahl, who works in advertising, enlisted the help of Nelson and Schmidt Marketing, a Milwaukee-based firm. Nelson and Schmidt offered their services pro bono and created a punchy ad designed to educate the public about Niemann-Pick.

“Most Niemann-Pick Disease victims won’t live long enough to get a driver’s license,” the ad reads. “Help stop the disease that’s stopping children’s lives.” The logo also includes the 800 number and the Web site of the National Niemann-Pick Disease Foundation.

W & A placed the advertisement on two trailers. “It’s very limited disease. There isn’t a lot of national funding, so raising awareness is very important,” Andersen explained. “It was a great opportunity to help.” According to Andersen, W & A’s drivers are always happy to drive the Niemann-Pick trucks. “They’re pleased to do whatever they can do,” he said.

In addition to the thousands of people who have read about Niemann-Pick as they drive by the trucks, dozens have called the national hotline for further information about the disease. When people telephone the 800 number, they are put through to Nadine Hill, director of the National Niemann-Pick Disease Foundation. Hill, who has been with the organization since 2001, receives between eight and 12 calls a year from interested motorists who want to learn more about the disease or find out how they can help. “It’s had lasting effects,” she said of W & A’s efforts. “People call the 800 number and they reach me, and I tell them about the disease.”

The ads have had an unforeseen result. Sometimes people mistake the 800 number for a quality-control number and call Hill to complain about the truckers’ driving. Hill doesn’t bat an eye. “I calm them down and then tell them about Niemann-Pick,” she said. “Every call gives us an opportunity to raise awareness.”

Barbara Vorpahl said shewould like to see the program expanded: “The more trucks that have the ads, the more people we can educate.”

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