Saturday, January 2, 2010


Dear Dani,

We looked at your site and it looks fantastic so we thought we would like to add our two bits to the project. Here goes:

What can $2.00 buy for DebRA – Dystrophic Epidermolysis Bullosa Research Association

For $2.00 DebRA can send out 3 educational DVD’s to families of children who are attending school for the first time or switching schools. It is so important that the teachers and students who will be welcoming an EB child to their class know what to expect. This DVD explains Epidermolysis Bullosa in the simplest terms. It compares EB to a lawn where there is the grass on top, roots of the grass burrowing into the dirt and the dirt. If the lawn didn’t have the roots to fasten grass and the dirt together ,there would be no connection so the grass would blow away and eventually so would the dirt. When someone has the genetic disorder EB, the top layer of the skin, the epidermis, is not “connected” to the bottom layer, the dermis, so the slightest touch causes severe blistering, inside and outside the body.

Kids are afraid of what they don’t know, if they see this video and talk to the EB parent and the teacher and get all of their questions answered before the EB child starts school it makes the transition for everyone involved to go smoothly. Kids can be very accepting; they just need to know what to expect and what the limitations are for the EB child and how to interact with them. If everyone has been prepared in advance the EB child becomes just another classmate. So, for $2.00, three DVD’s to three separate schools can educate each school’s teachers, and students – who will go home and tell their parents about their new classmate with EB and it goes on and on. As of today there is no cure or treatment for EB only wound care, bandaging and pain management. DebRA is busy raising awareness of EB so we can raise the money needed to help and support EB patients and their families and to help fund research towards a cure. 89.2 cents of every dollar donated to DebRA goes directly to patient services and research.

Pennie Cannon

Executive Assistant


DebRA of America, Inc.

16 E. 41st Street , 3rd Floor

New York, NY 10017

212 868-1573

212 868-9296 fax


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