Seven years ago Shaun Garff joined his older brother on one of the last legs of a 2,700-mile bike trek to raise money for a rare skin disease. Garff rode a few days with them and attended a news conference at Stanford University, and that was all it took to know it was something he wanted to do himself.

Now Garff has organized EBTrek08 to raise money for the same skin disease by cycling from Provo to Los Angeles in a circuitous route.

"It was something I wanted to do when I was at the right time in my college career," Garff said. "So this is the summer, and I forced these guys to come with me."

The guys joining Garff on EBTrek08 are his cousin Parry Garff, and friends Chandler Haueter and Chris Rains.

"He [Shaun], is very persuasive," Rains said.

The BYU students are planning to ride about 2,600 miles. They will start in Provo and head to Seattle through Idaho. After they arrive in Seattle, they will turn south and travel down the coast to Los Angeles. They will average about 80 miles a day, the longest distance in one day being 115 miles on June 4.

The cyclists left Monday, starting with a "short" ride to Salt Lake City.

They've only had their bikes, which were donated by Giant Bicycles, for a few days.

But they have been training in the BYU gym, as well as doing anything else they could to get in shape.

"I've just been going to the gym, spending some quality hours in there," Parry Garff said.

They are doing all this to raise awareness and money for epidermolysis bullosa, a rare genetic disorder characterized by infection and blistering of the skin due to minor trauma. The disease infects almost 100,000 Americans. The majority of these are children. Simple occurrences such as bathing, bumping into something, or even simple human touch can create new blisters or increase infection.

Gary and Lynn Anderson, friends of the Garff and Rains families lost two children to the disease. Following their tragic loss, the Andersons created Epidermolysis Bullosa Medical Research Fund in 1991.

"A big part of the ride is spreading the word," Shaun Garff said. "EB isn't a very well known disease. Not a lot of people know about it, let alone know that it is a life threatening disease and kills thousands of kids each year."

There are three main forms of the disease and while all forms are painful, some cases go as far as causing fusion of the fingers and toes, deformities, or in some cases even death. Also, some forms of the disease are fatal to a young child in the first year of life, but advancements in modern medicine have made it possible for most epidermolysis bullosa sufferers to live into their late 20s. By the time most suffers reach this age, they will succumb to an aggressive form of skin cancer known as squamous cell carcinoma, which is a result of the disease.

The cyclists are asking people to donate a penny for every mile they ride.

All donations from the trek will be donated to the Epidermolysis Bullosa Medical Research Fund. NuSkin, Giant Bicycles and Taylor's Bike Shop sponsored the trek. The four riders, as well as two major donors have funded the cost of the trek; so all other donations raised will go straight to the research fund.

With the first group, the breakdown of donations ended up being about the same between people who donated a cent a mile and people who made large donations.

"All the small donations add up to quite a bit," Rains said.

While they don't have any plans to do another ride in the near future, they leave the option open for others to come and do another EBTrek, or something similar through the umbrella organization Adventures for a Cause.

"Honestly I can see it happening again," Haueter said. "It's probably not going to be an every year kind of thing, but you'll get a group of guys that come in and will get excited about it."

To track their progress, donate and learn more about epidermolysis bullosa, visit ebtrek08.org

Copyright Brigham Young University 13 May 2008