April 17, 2007
Helping local boy with rare genetic disorder focus of Purdue students' projectWEST LAFAYETTE, Ind. - Three Purdue University seniors have designed and executed a promotional campaign to raise money and awareness for a 5-year-old local boy with a rare genetic disorder that prevents him from feeling pain or regulating his body temperature.
Andrew Eberwine, Chris Micek and Max Page, who are in Terry Burton's Contemporary Problems in Applied Computer Graphics class, created a Web site, Help Roberto, located at https://www.helproberto.com. The site provides information about Roberto and his disorder, in addition to ways the public can donate and become involved in spreading the word.
The boy behind the campaign is Roberto Salazar, who lives in Lafayette. He has a disorder called Congenital Insensitivity to Pain with Anhidrosis, known as CIPA. The genetic condition is extremely rare, with only 17 people in the United States known to have it.
Those with the disorder have a lack of pain sensation, which can lead to severe injury, and an inability to regulate their body temperature. As a result, most people with the disorder die by age 3 due to overheating. There is no known cure and no treatment. Instead, the focus is on trying to control symptoms.
The main goal of the promotion is to raise money to install a therapeutic exercise pool for Roberto to be able to exercise while reducing the chance of overheating and joint damage. Burton said the goal is $250,000 to equip the family with the kind of pool that would help Roberto.
Burton, an associate professor in the Department of Computer Graphics Technology, said a former student of his brought Roberto's case to his attention. The students in the class added the cause to their list of possible service-learning projects, did research and decided to do their senior capstone project on publicizing Roberto's situation.
"Roberto's cause had gotten some attention from the national media, including being featured on CNN's 'Anderson Cooper 360,' but there was no real centralized Web site or effort to bring his situation to the attention of the world," Burton said. "Our students did research on his disorder and found that there was an organization in Minnesota called Gift of Pain Inc. that was raising funds for him."
The students were able to connect with this group, and visitors to the Web site can make a donation through the site to help Roberto.
Page said that in addition to the satisfaction they feel in helping Roberto, they also had the opportunity to use scientific skills.
"We put together the Web site, but we also constructed the back end of the Web site to be able to track demographics, such as who is visiting the site and how much money they are giving to the cause," Page said. "This was a great opportunity for us to use the methodological skills we already possessed and put them into action."
In addition, Burton said the students learned about grass-roots marketing concepts that rely on word-of-mouth as opposed to relying on a large, impersonal, national organization to disseminate funds.
"This project is a classic example of 'viral marketing,' which is a bottom-up approach to drawing attention to a cause," he said. "Our goal with the Web site is to get people talking, spreading the word in the media, in blogs, on MySpace, on YouTube, really anywhere people are going for their news.
"Presenting the story of Roberto personalizes the cause for people, making them more likely to donate and become involved in learning about his disease."
The students will present their senior service-learning project and the data they have collected at 10 a.m. Wednesday (April 18) in Stewart Center, Room 310.
Burton said that he would like to continue similar projects and have students add to the data they've already collected about the impact and effectiveness of viral marketing.
"This has been a wonderful experience for the students, and it's been great to see them develop empathy and get so involved in the cause," he said. "It's a powerful reminder that their education enables them to do a lot of things."
For additional information on the Help Roberto campaign, contact email@example.com or visit https://www.helproberto.com. The students can be contacted at firstname.lastname@example.org or through their project Web site, https://www.seedmotion.com/
Writer: Kim Medaris, (765) 494-6998, email@example.com
Source: Terry Burton, (765) 494-7313, firstname.lastname@example.org
Purdue News Service: (765) 494-2096; email@example.com
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