The EBMRF is a nonprofit, sole purpose foundation dedicated to the support of medical research of epidermolysis bullosa (EB)--its causes, its cure, and the development of successful treatments. We invite you to join us in this Home Page to learn about this disabling disease and participate in sustaining research on EB. |
EB is a group of diseases characterized by blister formation after minor injury to the skin. This family of disorders, most of which are inherited, range in degrees of severity from mild to severely disabling and life-threatening disease of the skin. How serious can a skin disease be? Try to image a child with painful wounds similar to burns covering most of his or her body. Unlike burns, these wounds never go away. This child cannot roller skate, play sports, or ride bikes because the normal activity of children causes chronic sores. The daily bath requires pain medication, yet still causes tears as water meets open sores. Wounds may cover as much as 75% of the child's body.
Epidermolysis Bullosa is seen in three primary forms: Epidermolysis bullosa simplex (EBS), Recessive dystrophic epidermolysis bullosa (RDEB), and Recessive junction epidermolysis bullosa (RJEB). Here is an infant with blisters on the face and other parts of the body. |
Imagine a diet of only liquids or soft foods because blistering and scarring occur in the esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. The eyeballs may blister. Chronic anemia causes reduced energy and growth is retarded. There is little hope for life beyond 30 years.
This describes the life of a child born with severe forms epidermolysis bullosa.
This rare genetic disorder affects all ethnic and racial groups. Estimates indicate that as many as 100,000 Americans suffer from some form of EB.
The EB Medical Research Foundation was established in 1991 by Gary and Lynn Fechser Anderson at the request of Dr. Eugene A. Bauer, then Professor and Chairman of the Department of Dermatology, Stanford School of Medicine. The Andersons have lost two children, Chuck and Christine, to epidermolysis bullosa. Both children suffered deformities of the hands and feet, chronic anemia, malnutrition, and growth retardation.
Neither child ever weighed more than 84 lbs. The worst part of the disease was the constant pain. Near the end of their lives, they suffered as much as 75% of their bodies in open wounds. Relief came only when they were sedated to the point of sleep. Chuck died of skin cancer (another side effect of the disease) at age 27, and Christine died of heart failure at age 14.
We shall begin our Web site presentations with a brief review of gene therapy for EB being conducted at Stanford University.
 Lynn Anderson, President of the EBMRF, listens to a lecture on gene therapy for EB by Dr. Lane, Chairperson, Stanford Dermatology Department. |
Dr. Al Lane, Professor of Dermatology and Pediatrics and Chairperson, Department of Dermatology, Stanford School of Medicine, presents the following status of gene therapy for EB:
Scientists in the Department of Dermatology at the Stanford University School of Medicine are on the threshold of a gene therapy program that could change the lives of EB children forever. They have already identified the defective genes for the two lethal forms of EB--recessive junctional and dystrophic forms. The next step in their research program led to the reproduction of defective EB cells, which have since been grown on laboratory mice having skin very similar to human skin. The scientists are now beginning to correct the genetic defect (EB) on these mice.
Within the next three years, the Stanford investigators expect to be treating the first EB children with gene therapy. This is truly a time of hope for EB families; EB patients will not be the only ones to benefit from the Stanford research program. What researchers are learning about gene therapy will be applicable to all genetic diseases.
On April 15, 1996, a fund-raising event was held at the Davies Symphony Hall in San Francisco. The Forever Young Foundation, the Warren Blosil family, and the EB Medical Research Foundation sponsored a concert with the San Francisco Symphony Orchestra, composers Kurt Bestor and Sam Cardon, the San Francisco Girls Chorus, and the San Francisco Symphony Chorus in presenting INNOVATORS, a beautiful and inspiring musical program. Steve Young of the 49er football fame narrated the program with warmth and wit. The audience filled the Davies Hall and responded with tremendous applause at the end of the concert. Twenty EB children and their families were honored during the program.
Steve Young met with the EB children and their families prior to the concert in a special reception. He signed autographs for all who attended the party.
The EB Foundation extends its deep appreciation to the many people who contributed their time and efforts in making the concert benefit a success. An especial recognition is given to the Blosil family of Utah for their outstanding participation. This is the second benefit the Blosil family has planned and produced in behalf of the EBMRF.
Funds gleaned from the concert have been allocated to the gene therapy research being done at Stanford University.
Steve Young chats with EB patients, Kelly Drewrey of Los Gatos, CA, and Henry Riojas of Fremont, CA. |
We are very excited by the recent help received from NuSkin International, Inc. At their recent international convention, NuSkin presented its "Force For Good" campaign--a beautiful effort to provide financial aid to needy people around the world. EB children are very fortunate to be included in this generous giving program. In fact, NuSkin is the first coorporation to commit to funding for EB research until a cure is found. What a gift to the research program and to EB families everywhere!
NuSkin contributions for this year will total more than $100,000, and things continue to happen as a result of the sensitive film about EB that was presented at the convention. It has been surprising and inspiring to see such an overwhelming response from the distributors, generous people willing to donate financial support, time, and resources in support of EB research.
I would like to invite readers to search the Internet for information about Playco toys. For each toy purchased through the Internet during the month of December. Playco will donate 50 cents toward EB medical research. You, too, can help free EB children from suffering by purchasing Playco toys! This is just one of the terrific fund-raising opportunities to come to the EBMRF through NuSkin distributors. We sincerely thank Travis West and Dennis Pretz from NuSkin and Rich Brady from Playco for this holiday gift to EB children! (Playco's Web Address is www.Playco.com)