Welcome to the home of the INTERNATIONAL EPIDERMOLYSIS BULLOSA AWARENESS WEEK campaign, which takes place the last week of October (10/25-31) each year! EB DAY is recognized on October 25th. This campaign is endorsed by DEBRA International and DEBRA national chapters worldwide, by EB Medical Research Foundation, and by EURORDIS, CORD, NORD, and other nonprofit partners who help people with EB, rare diseases and skin diseases. In 2010, this new international campaign reached 45 countries; at last count, we have reached individuals and organizations in 99 countries around the world. Now, in 2013, we want to see our campaign reach 125 countries. That IS achievable if we all do our part to tell the world about International EB Awareness Week; give them the facts about what EB is; tell the world why we care; stress that there is no cure as yet; illustrate that we are working hard on research for a cure and effective treatments; and USE this week to connect with new volunteers, educate more people and raise funds for our objectives, to do OUR BEST for people with EB around the world. To find a DEBRA organization around the world, or contact DEBRA International's "EB Without Borders" committee whose members assist people with EB wherever there is no DEBRA charity to help, go to www.debra-international.org.
There are SEVEN important elements to the International EB Awareness Week campaign:
1. Proclamations - by government representatives pronouncing IEBAW, see this page to seek proclamations where YOU are. Proclamations are important - it helps for your government representatives to say publicly that they SUPPORT people with EB, and often this will reach the media eye and create greater awareness.
2. Press Releases - see this page to download an older one (2013 to come very soon!) - customize it if you are an EB organization, and seek to promote IEBAW through media opportunities.
3. Public Service Announcement - In 2011, we ran a global PSA featured popular actress Courteney Cox. Many TV stations will air PSA's for free for charitable organizations. Try to use local celebrities to help you get the word out, if you can. Even if you can't, use YOUR story as the foundation and contact the media, tell them why awareness is important, tell them what you need, ask them to help you get your EB story out there in the public eye - it CAN be done.
4. Posters - for several years, we have had continued to update a global poster to create awareness. This year's is below, in low resolution for emailing and high resolution for printing. If you don't see your country represented in the photos, email Gena and ask for your country to be added in order to promote EB awareness where you are!
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!
6. Merchandise - in the past, we have had IEBAW and EB Day merchandise available online. Merchandise will be available again in 2014. ALL proceeds from merchandise available at this website will go to DEBRA International for EB research and the development of global "best medical practices."
7. Social Media - use the Facebook cover picture below to promote IEBAW! Also, be sure to TWEET about this important week, put the global poster on your website or blog, etc. Social media is an incredibly powerful tool that we must use to recognize this important week!
IEBAW's principal fundraising project, Walk a Mile in My Shoes, can be used by ANY EB awareness/fundraising event in ANY country! We welcome 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/Exec. Director
GLOBAL IEBAW POSTERS - use them everywhere!!!
High resolution: click here to access the Dropbox
Low resolution: right-click the image below and download.
Facebook cover picture - post it on your Facebook profile and share with "friends" and "public"!
INTERNATIONAL EB AWARENESS WEEK... is an important time of the year for ALL charitable organizations who help those affected by EB. This 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 2013! 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 Libya, Abu Dhabi, Pakistan, Algeria, and Trinidad & Tobago, as well as Associate members like those in Iran and Vietnam. 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, 2013.
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 - please spread the word and recognize International Epidermolysis Bullosa Awareness Week!!!
Gena Brumitt | Create Your Badge
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