By Sarah Bastian
Five BYU students are going to begin a cross country trek beginning Monday, June 18, in hopes of making a difference in the lives of those infected with a serious skin disease.
Jamie Gibson, 23, a junior from Dugway, Utah, majoring in American studies, has epidermolysis bullosa, a rare genetic skin disease that causes sores and blistering on the skin with even the slightest touch.
Gibson has to take notes in class by pinching a pencil between her stubbed fingers, scarred by years of sores.
She said she is constantly in pain.
These five BYU students are trying to make a difference in the lives of EB sufferers like Gibson.
On Monday, they will begin a 2,600-mile bike ride to raise money for research on EB.
Andrew Berthrong, Dan Hoopes, Jake Merback, Rocky Garff and Joey Merback hope to raise $50,000 for the Epidermolysis Bullosa Medical Research Foundation.
“Our stake president at home lost two kids to EB,” said Garff, 23, from Lafayette, California, a graduate in economics. “They started a foundation in 1991, the Epidermolysis Bullosa Medical Research Foundation.”
Garff and his roommates decided they wanted to participate in a bike ride about a year ago. When they realized they could raise money for a cause through their ride, the group began to organize things with the EBMRF.
“We wanted to do a ride and we looked at some different options. They needed the money,” he said.
The EBTrek team, as they are called, will ride north from Provo to Vancouver, British Columbia and then south to Tijuana, Mexico.
“It will take about 45 days to get it done,” said Merback, 24, from Las Vegas, Nevada, a graduate in history. “That gives us five or six days of leeway. And we”re not riding on Sundays.”
The team is in the process of fundraising. They have raised $13,674, but still have a long way to go before reaching their goal of $50,000.
“We”re going to send out letters to everyone we know,” said Berthrong, 24, a senior, from Moraga, California, majoring in English and history.
The team is contacting television stations along the way. They have a news conference lined up with Steve Young, Berthrong said.
Besides contacting the media, the team says that their Web site, http://www.ebtrek.org, is their main source of information for donors.
“The main thing we want is for people to go to our Web site,” said Hoopes, 24, from Moraga, California, a graduate in microbiology.
The Web site contains information about the ride and the disease. When the team begins their ride, it will have day-to-day updates on the activities of the riders.
The team has been training for the trek. None of them have participated in a ride this long before.
“We ride about three or four times a week,” Berthrong said. “We started out with 30 miles a day. Now we ride 40 miles a day.”
The team said they are willing to spend so much time on the project because they believe it is for a good cause.
“The disease we are doing it for is one of the most terrible things I”ve ever heard of, Berthrong said.
“It”s one of the most painful things that I can think of. It”s one of those things that we can probably make a difference with.”
For Gibson, this ride may be an answer to some of her problems.
Effective treatment and even a cure would be relief, she said.The disease has affected her whole life.
Part of Gibson”s morning routine is wrapping her arms and legs in bandages to protect them from blistering.
Her first year at college, she said she got infections from not getting enough sleep.
“I got really sick because it was too much,” Gibson said. “I had to withdraw.”
Now, Gibson has a nurse help her with her bandages and a home-help aide to help her with cooking and other tasks.
Gibson endured many medical treatments while growing up.
“I”ve had procedures where they”ve put a balloon-type thing down my throat to stretch it out,” she said.
She has also had to have surgeries in connection with the surgery to replace her esophagus with a piece of her colon.
“It really messed up my insides,” she said.
Priesthood blessings have helped her be able to function with the disease, Gibson said.
According to information provided by the EBMRF, many EB patients live their lives wrapped up like mummies to protect their skin.
EB can vary in severity. Some children die within their first year if they have the most severe type of the disease.
Research has enabled sufferers to live longer, but most do not live beyond 30 years.
Garff said effective treatment for EB is just around the corner. He said funding is needed for further research.
With the $50,000 the EBTrek team hopes to raise, researchers may be a step closer to finding relief for Gibson and her fellow EB sufferers.
