DEBRA Canada Announces, Rare Butterflies Unite This Month to Share Global Awareness

Toronto, Canada, October 25, 2009 --(PR.com)-- With heartfelt observation the world over, the last week of October this year marks the inauguration of International Epidermolysis Bullosa Awareness Week. Epidermolysis Bullosa or “EB” is a group of inherited blistering disorders characterized by exceptionally fragile skin and excruciating chronic wounds. Doctors familiar with this disease have described it as “the most painful disease known to man.” The objectives of this endeavor are threefold:
- To increase global awareness;
- To provide advocacy for compassionate public policies in every country; and
- To promote research and the development of new treatments

The non-profit charity, Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Canada, leads this undertaking in concurrence with DEBRA charity organizations in 40 countries around the world and in unity with the Epidermolysis Bullosa Medical Research Foundation. The sanction of the World Health Organization and the United Nations is sought.

With its institution, this special week is recognized annually on October 25-31, in accord with National Epidermolysis Bullosa Awareness Week, legislated in the United States in 2006, as sponsored in 2005 by NY Congressman Tim Bishop, Senator Charles Schumer and former-Senator Hillary Clinton. Legislation is underway in many countries to formalize additional nationwide edicts. These efforts are endorsed by rare disease advocacy groups EURORDIS, NORD and CORD. Both national and international undertakings have been led by American expatriate Gena Brumitt Gruschovnik. Her mother, the late Lillian “Pat” Barbrey, had a severe recessive form of this disease – so severe that people with it almost never become parents.

Skin is the body’s first line of protection against the elements. With EB, blisters erupt from the slightest trauma, even elemental activities like crawling, walking, sitting, eating, writing, rolling over in bed, and the chafing of seams or tags in conventional clothing. This circumstance is caused by a genetic mutation: a missing or damaged protein causes the breakdown of necessary anchoring filaments between skin layers. The blisters are described by doctors as being similar to a 2nd or 3rd degree burn.

EB occurs in every racial and ethnic group and affects both genders. It does not affect intelligence. As many as 500,000 people worldwide suffer from some form of EB, at a rate of 1 in 12-17,000. Milder forms of the condition may remain undiagnosed. EB is considered a rare or “orphan” disorder, lacking the ubiquitous influence to procure vital research funds. Several clinical studies show great promise, but more funds are needed to expand this essential research.

People with EB have come to be known in some countries as “butterfly children” because their skin is extraordinarily delicate like a butterfly’s wings. Common occurrences in severe forms of EB include open wounds, disfiguring scars, musculoskeletal deformities causing restricted function, internal and external blistering, malnutrition, and deterioration of the eyes and teeth. In severe cases, EB is often disabling and life-threatening, requiring daily wound care similar to that given to acute burn patients.

Brumitt Gruschovnik and her fellow EB advocates are globally committed to leading a fundamental movement of change. President of DEBRA Canada, Jay Wilson, asserts in the organization’s newsletter, “It is of paramount importance that every member of the EB community makes the same request, to ensure that our collective voice is as vigorous and influential as possible. It is my deepest desire that this endeavor will be an agent of change to enlighten the general public, and lead to advancement in research and increased patient supports.” With this organization’s determined outreach, proclamations have been publicized by nearly every province and territory, and countless cities across Canada.

What the global public can do:
* Contact local and regional government representatives and establish that you are a constituent – ask them to issue a public proclamation of International Epidermolysis Bullosa Awareness Week;
* Visit the website mywalkamile.org to learn more about EB, and consider hosting, or participating in, an awareness/fundraising event;
* Distribute information to clubs, organizations, libraries, businesses, the media, hospitals and schools;
* Donate to your regional EB charity – working in unity each October are the DEBRA groups found on the global listing at www.debra-international.org, and EBMRF www.ebkids.org; and
* Tell everyone you know about this awareness campaign – mobilize street teams and use viral marketing tools like blogs and social networking sites to urge others to visit mywalkamile.org, where you will find a complete press release.

The purpose of this week is to start a constructive conversation with the public, policy-makers, the media and the medical community that will generate awareness, reduce discrimination, remove barriers and preconceived ideas, ensure fair and equitable treatment, and create opportunities.

Please take the time to learn about EB, and if you can, make a private or corporate donation to fund EB research.

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Media Contact:
Email: gena@mywalkamile.org
Website: mywalkamile.org