Copyright 1999 Park Projects. Please feel free to use the article and photos below in your research. Be sure to quote the Jet City Maven as your source.
Wallingford resident D.M. Hoyt, a 32-year-old structural engineer, recently began a 10,000-mile solo motorcycle journey through North and South America.
It's all for a good cause: the goal of Hoyt's so-called "EB Cure Ride 2000" is to raise awareness of a skin disorder called Epidermolysis Bullosa (EB) and to raise money to find its cure. Hoyt is one of more than 100,000 Americans who are afflicted by this traumatic and disabling inherited skin disorder.
One hundred percent of the money raised during Hoyt's EB Cure Ride 2000 will go directly to the Dystrophic Epidermolysis Bullosa Research Assocation of America Inc. (DebRA), a voluntary, non-profit organization dedicated to finding a cure for EB.
A KOMO TV4 Special Report on EB and Hoyt's ride aired on Nov. 9 during the 11 o'clock news. A send-off party for Hoyt was held on Nov. 21. EB families from the area attended, as well as Dr. Virginia Sybert, an EB specialist from the University of Washington Department of Medicine.
Several other promotional events are planned along the route including a tour of genetic research labs at Stanford on Dec. 3, a potluck dinner with the Southern California EB support group on Dec. 5 in Los Angeles, and possibly a fiesta with an EB group in Monterrey, Mexico, around Dec. 15.
Hoyt has a form of EB Simplex known as Dowling Meara, which has been in his family for at least four generations. In Hoyt's family, this form of EB was much more severe during childhood. For them, the symptoms became progressively better with age. However, Hoyt still suffers from fragile skin and blistering. In most cases, EB does not get better with age.
"As a child, I remember going to doctors and dermatologists all over the country and finding that most of them had never heard of EB," recalls Hoyt. "There was really no treatment available, let alone a cure. I think that the work DebRA has done in raising awareness of this disease, setting up support groups and funding research toward a cure has really improved the quality of life for tens of thousands of EB patients around the world."
In 1994, Hoyt's family was the subject of a genetic research study which resulted in the mapping of the gene mutation that causes Dowling Meara. Through this close involvement, Hoyt became very enthusiastic about the research and the promising outlook for a cure. At that moment, the idea of a fundraising trip was born.
"I knew I wanted to do something to help, but I realized I needed to do more than giving a donation every year. I thought that a sort of ride-a-thon would be a lot more effective in raising awareness and funds for a cure."
Hoyt has undertaken many independent trips over the past 13 years in Europe, Northern Africa, and Central and South America, as well as several long-distance motorcycle trips throughout the Western U.S., Canada and Alaska. These trips are at times a challenge for Hoyt, as they would be for any EB patient. Hoyt often faces challenges that other adventurers do not face.
"The blisters sometimes become a problem," he says. "I just have to stop, rest and let them heal."
Through EB Cure Ride 2000, Hoyt hopes to raise funds for a cure, raise awareness of EB in the U.S., Mexico and Canada, and to raise hope for children with EB all over the world.
Hoyt lives and works in Seattle, where he owns a small business specializingin aircraft structural engineering.
JET CITY MAVEN - VOL. 3, ISSUE 12, DECEMBER 1999
Riding for DebRA