PLEASANT GROVE, Utah (September 22, 2008) -- On Sunday October 26th, 2008, Peter Freeman, a British marathoner from St. Albans, Herts UK, is running the Venice Italy Marathon in support of the United Survivors with Epidermolysis Bullosa (USeb), www.ebsurvivors.org, a nonprofit charity which is seeking sponsorship for a camp for kids with this rare, incurable genetic disease. The marathon runs 26.2 miles, finishing just past the famous Piazza San Marco in the heart of Venice, alongside the Grand Canal.

Epidermolysis Bullosa is a rare genetic skin disorder that causes a person's skin layers to easily separate from slight friction, causing large blisters and open wounds.  It affects all the connective tissue and mucous membranes of the body, both externally on the skin and with internal organs, and can cause blistering and scarring even to the mouth, throat, and cornea of the eyes. The damaging effects of some types of EB cause cancer in adult years. Formerly, EB has been known as a child's disease because most who were born with severe forms did not live past adolescence.  However, with recent technological and medical advances, many survivors live well into adulthood, which offers an entirely different set of unique challenges mainly focusing on independent living.

USeb is a certified 501(c)(3) nonprofit organization founded by EB survivor Jamie Gibson Hartley, her husband Taylor Hartley, and run by young EB survivors with the mission to help other survivors become more self-reliant. "Our belief at USeb is that an EB survivor should have the chance to move beyond survival mode, with energy and time to live a full rewarding life.  Our ideal is to provide assistance to survivors that will lessen the burdens of merely coping so that they can begin living the life that they dream about," says Ms. Hartley.

Freeman's hope is that his race will generate increased support for USeb, and perhaps as importantly more awareness about this deadly illness. "I got involved with EB three years ago, after reading an article by the beautiful Nell McAndrew in a running magazine about Jonny Kennedy and why Nell was running the London Marathon," Freeman said.   Jonny Kennedy is a young man who died as a result of EB, and he's also the focus of a film called The Boy Whose Skin Fell Off.  Freeman was so moved by the article and the extreme challenges faced by EB survivors that he picked up the phone the next morning to find out how he could help.  Freeman recently found out about USeb through an online network called EB Friends, and, as he put it, "offered his running legs."

All donations to USeb are tax-deductible.

He added, "Why Venice?  It's a beautiful romantic city.  So it's a great chance to say thank you to my wife for putting up with my running."  The 49-year-old family man has two kids, 18 and 16.  When he's not running for a cause he works in London advising young companies. "My running training involves walking the grey hound who out sprints me, and then when I'm tired, running around the local Roman town, or along the River Thames at Lunch time." The Venice Marathon is unique in that the streets are flooded! and there is a specially built floating pontoon to cross the Grand Canal "But if you don't finish the distance inside six hours they take the pontoon bridge away!" explains Freeman. The race passes the famous St Marks Square, Basillica and Doges Palace with a glimpse of the bridge of Sighs if you remember to look for it.

Freeman met Tony Blair when he was prime minister. "He wandered into a room where I was meeting with one of his advisers, where I had the chance to talk to him about EB and how much his wife's support was appreciated," he said.

"It will be possible to see how slowly a 49 and a bit year old runs in Venice on race day on www.venicemarathon.it and my race number is 6542," Freeman adds. "If by any amazing chance you are in Venice give me a cheer as its a long way!"