National EB awareness week
FOR IMMEDIATE RELEASE
PUT YOUR COMPASSION IN ACTION, AMERICA!
---"National Epidermolysis Bullosa Awareness Week" Campaign Eagerly Anticipated---
New York / Los Angeles / Stanford – The skin disease Epidermolysis Bullosa (EB) is set to receive a substantial boost in public awareness with the upcoming "Walk a Mile in My Shoes" Relay-Rally, in response to new laws proclaiming the last week of October, "National Epidermolysis Bullosa Awareness Week." The inaugural campaign (http://www.ebrelay.org) is being organized by EB advocate Gena Brumitt Gruschovnik, whose mother had a severe recessive form of the condition. Lillian Ann Barbrey (née Brumitt) died from EB-related complications in 2000. The campaign will begin in New York on October 25, and end in California on October 31.
Picture for a moment… a young child wrapped in gauze to protect agonizing sores that cover the majority of a small, frail body. Imagine that child smiling bravely through tears because it's hard to understand why every day hurts so much! If you can conjure up an image of this child, then you've envisioned someone who needs your help, but more importantly, someone you can help.
EB is a group of genetic disorders characterized by exceptionally fragile skin and chronic, painful wounds and blisters caused by the slightest trauma, even normal day-to-day activities. The disease affects people of both genders and every ethnicity. It is believed that as many as 500,000 people worldwide suffer from some form of EB. It is an "orphan disorder," meaning it affects less than 200,000 Americans. 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. It is often disabling and life-threatening, requiring daily wound care similar to that given to acute burn patients.
There is no cure, but there is something about the word "incurable" that is contrary to the indomitable nature of people living with EB. There is an unfortunate gap between what is and what should be, in terms of awareness and knowledge, and changing that is vital to the EB community. Ms. Gruschovnik is determined to lead a movement to fundamentally change the experiences and expectations of the EB community, to unify and harmonize all who are in a relentless quest for effective treatments and a cure for all three types of EB.
Gruschovnik says, "Those we support should expect no less of this community than our integrity-driven best. People living with EB are physically vulnerable, but we must foster understanding about this condition so that society as a whole becomes better informed. We must demand that they be treated with dignity, respect and understanding, yet leave room for self-determination. Our assets are unity, knowledge and attitude. Kahlil Gibran said, 'Out of suffering have emerged the strongest souls; the most massive characters are seared with scars,' and I can tell you that, in my Mother's case, this axiom was true. In spite of the disease that made each and every day a trial for her, I can only wish to be as strong and alive as she was."
The impact of EB on patients and their families can be physically, psychologically and economically devastating. As well, the public, most healthcare professionals, educators, and the majority of government officials are unfamiliar with the disorder. Dr. Stephen Berman of the Denver EB Clinic was recently quoted in the Rocky Mountain News as saying, "It's probably the worst disease a child can have. Every day there's pain." A National Epidermolysis Bullosa Registry has been in place since 1986.
Two registered 501(c)3 nonprofit organizations that are tenacious in helping people with EB have joined forces with Gruschovnik, to produce an event of nationwide significance. DebRA of America (www.debra.org) is committed to promoting research for a cure, and providing information and support for people living with EB and their families. The EB Medical Research Foundation (www.ebkids.org) is dedicated to the support of medical research for EB, its causes, the development of successful treatments and, ultimately, its cure. EBMRF is also strongly committed to increasing public awareness. Gruschovnik, an American living in Ontario, is on the Board of Directors of DebRA Canada. The organizations ask that the American people and interested groups visit www.ebrelay.org, and participate in campaign activities.
The objective of the "Walk a Mile in My Shoes" campaign is to create a culture of advocacy, including:
A Relay from October 25-31, wherein participants will traverse secondary roads across America, from New York to California – walking, running, wheeling, biking, driving, and displaying EB awareness campaign messages;
Rallies and press conferences in each day's destination, to include stops in Pennsylvania, Ohio, Kansas, Colorado, Utah, Nevada and, finally, California;
Donations to the two primary nonprofit organizations, via a Network for Good website charity badge, which can be accessed now; and
Associated spin-off community campaigns, relays and rallies across America.
Ms. Gruschovnik will undertake the cross-country journey with a team of EB advocates – driving many hours daily, and walking as time permits. As advocacy is most successful when those who are being advocated are as invested as those promoting their interests, campaign collaborators hope to see the majority of the EB community participate in some way. Volunteers are sought to oversee an online Second Life relay, for people who cannot physically participate in other events.
Community Campaign and Fundraising Resources are being generated and will soon be available at http://www.ebrelay.org. These will include brochures, posters, pledge sheets, etc., for community campaigns and fundraisers throughout America. Approved activities will be posted on the website.
What the public can do right now:
Visit the website and indicate by completing the online forms that you plan to participate individually or as a group in the October EB Relay and Rallies, request progress updates, and/or ask to help coordinate the campaign by distributing information to clubs, organizations, libraries, businesses, the media, those in the medical or educational field, etc;
Contact your government representatives and ask them to issue a public proclamation of National Epidermolysis Bullosa Awareness Week; and
Tell everyone you know about the website, and use viral marketing tools including blogs and social networking sites like MySpace and Facebook, to urge others to visit http://www.ebrelay.org
Gena Brumitt Gruschovnik, "Walk a Mile in My Shoes" EB Relay-Rally
For National Epidermolysis Bullosa Awareness Week 2007