INTERNATIONAL EB AWARENESS WEEK 2010 PRESS RELEASE <<click here, and share with the media!
Welcome to the home of the INTERNATIONAL EB AWARENESS WEEK campaign, which takes place the last week of October (10/25-31) each year! In 2010, its second year, this campaign enters a new phase and becomes truly global... and its principal fundraising project, Walk a Mile in My Shoes, will take place in many countries! This campaign is endorsed by DEBRA International, EURORDIS, NORD and CORD, and welcomes nonprofit Community Partners from around the world: all who wish to see the objectives of this week fulfilled. Advocacy from the World Health Organization and the United Nations is sought by all DEBRA charity groups and EBMRF, working as ONE. Please join us - so that we can be the change that we want to see in the world! ~ Gena Brumitt, Founder/E.D.
**TWEET it - and help us BEAT it!**
![WINNER, Rare Disease Day 2010 Video Contest - "Garrett: The Boy Beneath the Bandages"](/Content/ArtText/1/352243/166204-2.png "WINNER, Rare Disease Day 2010 Video Contest - "Garrett: The Boy Beneath the Bandages"")
MAIN resource to create awareness: 1-Page Proclamation Example
Walkathon How-To Motorcycle Ride Fundraiser How-To "GLOBAL GALLERY" POSTER COMING SOON!
Fundraising Activities Pledge Sheet for YOUR Event Tri-fold Brochure - OUTSIDE Tri-fold Brochure - INSIDE
INTERNATIONAL EB AWARENESS WEEK is an important time for ALL charitable organizations for people affected by EB. It is the ONLY week-long time-frame EACH YEAR when our charitable organizations, people with EB, EB families and EB advocates, can use a global PR campaign to promote THEIR objectives, whether it is to make connections and increase an organization's membership, support existing members with special programs, raise funds that are vitally needed for EB research, or simply to get more support from policy-makers and medical professionals. Proclamations made by policy-makers and highlighted in the media draws attention to your nonprofits, and creates a greater global understanding of the challenges of EB. Awareness begets many positive outcomes, as long as it is fact-based, and avoids portraying people with EB as "victims." Please use this campaign for your own "Compassion in ACTION" tool n 2010! Adopt it and make it your own.
At the core of our global strategy is a targeted and sustained outreach campaign, already underway in many countries where there are DEBRA national organizations. Please devote some of YOUR time to this outreach. 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 2nd or 3rd 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 charity organizations. EB is not contagious. It affects both genders, and occurs in every racial and ethnic group throughout the world. One in 17-20,000 live births is affected by EB, and there are high mortality rates for infants, children and young adults in severe forms. 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, 2010.
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 link to all DEBRA groups will be added VERY 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.
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