At the core of our global strategy is a targeted and sustained outreach campaign, already underway in six countries.  We hope YOU can devote some time to it.  Even if you only have one hour a week, your energies can help!  The job?  To request INTERNATIONAL EB AWARENESS WEEK proclamations from policy-makers in your country, thereby creating EB awareness.  To participate is easy - just gather up the tools provided here, and get writing!  Remember the words of Margaret Mead: "Never doubt that a small group of thoughtful, committed citizens can change the world.  Indeed, it is the only thing that ever has."

IN LIGHT OF THIS BEING AN "AWARENESS" CAMPAIGN... A FEW WORDS ABOUT EPIDERMOLYSIS BULLOSA.

Epidermolysis Bullosa, commonly known as EB, is a family of genetic diseases characterized by the presence of extremely fragile skin – so fragile that the slightest touch can result in the development of recurrent, painful blisters and open wounds. In some forms of the disease, disfiguring scars, disabling musculoskeletal deformities and internal blistering are commonplace.  This short video depicts what one little boy goes through during a typical dressing change: Bandage Change

With EB, life’s normal activities cause blisters similar to 2^nd or 3^rd degree burns - simple things like crawling, walking, eating, rolling over in bed - even minor chafing from the seams or tags in clothing.  In view of such delicacy, the butterfly is an often-used motif for EB charities.  EB is not contagious.  It affects both genders, and occurs in every racial and ethnic group throughout the world.  An estimated 1 of 17,000 live births is affected by EB, and there are high mortality rates for infants, children and young adults in severe forms.  You can learn more about EB here.                    

The main objectives of International EB Awareness Week, and the Walk a Mile in My Shoes campaign, are to boost awareness among policy-makers and society at large about EB and its intrinsic impact on the lives of patients and patient families.  The week is October 25-31, 2009. 

Please see the recommended proclamation and invite policy-makers in your country, state, province, city or town to sanction it and publicize their announcement.  Outreach tools for the International EB Awareness Week proclamation-request campaign are available NOW.  If you use tools from this website and your event will (in part) benefit an EB family foundation, please give at least 50% of profits to a DEBRA charity or EB Medical Research Foundation, the nonprofits we endorse in this campaign.  A database of participating DEBRA groups will be added soon.

To find out what is happening in your country, click here. To learn how YOU can host an event or do fundraising, see resources provided for your use.  If you are planning an event, please sign up as a member advocate and provide information so that we can maximize publicity for your activity.

We invite the media and bloggers to help us raise awareness and to that end, we provide press releases and fact sheets.

After International EB Awareness Week, a very special gala fundraising event will take place on December 14th, simultaneously in Rome, Toronto and New York City.  Its objective is to raise money for EB research.  To learn more, please check out this link to Tomorrow Think of Me!

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