If you learned of this site from the 2011 public service announcement featuring actress Courteney Cox, or from a news article, please see the global map to locate YOUR country's charitable EB organizations, and let them know what YOU can do to help people with EB. Thank you!
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, it reached 45 countries; in 2011 it had reached 65 countries; and as of March 14, 2012, our campaign has reached individuals and organizations in 71 countries around the world.
There are SIX important components to the International EB Awareness Week campaign:
1. Proclamations - by government representatives pronouncing IEBAW, see this page to seek proclamations where YOU are.
2. Press Releases - see this page to download yours from 2011 (2012 to come!) - customize it if you are an EB organization, and seek to promote IEBAW through media opportunities.
3. Public Service Announcement - 2011's featured actress Courteney Cox, email Gena for further information to request the announcement for 2012 to have it air on local television. Many TV stations will air PSA's for free for charitable organizations.
4. Posters - see our 2011 global posters below (2012 to come!), in two styles (horizontal and vertical), and in low resolution for emailing, and high resolution for printing large posters to get the word out about IEBAW.
5. Projects - for those of you who are holding awareness and fundraising events, please click around the site to see the various resources available, no matter what your project might be to raise money for EB research!
IEBAW's principal fundraising project, Walk a Mile in My Shoes, can be used by ANY EB awareness/fundraising event in ANY country! This global campaign is endorsed by DEBRA International and DEBRA national chapters in a multitude of countries, EB Medical Research Foundation, and rare disease organizations EURORDIS, NORD and CORD. We welcome nonprofit Community Partners from around the world: all who wish to see the objectives of this week fulfilled! World Health Organization concurrence is strongly requested this year by participants in the international EB community, working together as ONE.
Please join us as an advocate for people with EB - and help us be the change that we want to see in the world! Just to give you an IDEA of what people can accomplish when they work together toward a clear goal, have a look at the National EB Dressing Scheme that is now in place thanks to the herculean efforts of DEBRA Australia, announced in honor of our first International EB Awareness Week! ~ Gena Brumitt, Founder/E.D.
2011 PRESS RELEASE - download the IEBAW press release (or wait for 2012's updated press release) and share with the media everywhere, or get the customizable version, both found at the link.
GLOBAL GALLERY POSTERS
VERTICAL STYLE LOW RESOLUTION FOR EMAILING OR HIGH RESOLUTION FOR PRINTING
HORIZONTAL STYLE LOW RESOLUTION FOR EMAILING OR HIGH RESOLUTION FOR PRINTING
![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"")
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 in 2011! 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, and grassroots DEBRA start-up groups like those in Abu Dhabi, Iran, Vietnam and Trinidad & Tobago. 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."
AND JUST WHAT IS 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 - from 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, 2011.
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. See the map here to find a charitable organization.
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.
Gena Brumitt | Create Your Badge
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