campaign is to build a bridge of compassion, and create a culture of advocacy. We need to change the experiences and the expectations of the EB community, and work in harmony so that effective treatments and a cure are our reality, not just a dream. There are several components to this campaign, and one of them is available for participation to people anywhere in the world!
New York, NY / Stanford, CA (PRWEB) October 22, 2007
While the migration of thousands of butterflies (the insect) is an incredible sight to behold, you may find yourself more strongly affected by butterflies (the human kind) alighting in designated locations across the U.S. the last week of October.
This coming October 25 marks the first day of "National Epidermolysis Bullosa Awareness Week" as designated by Congress and the Senate in late 2006, in honor of Americans with the genetic disease, Epidermolysis Bullosa (EB). People with EB are known as "butterflies" or "butterfly children" because their skin is as fragile as a butterfly's wings.
This disorder is set to receive a liberal serving of public awareness with its upcoming "Walk a Mile in My Shoes" Relay-Rally! This inaugural campaign (http://www.ebrelay.org) is the brainchild of EB advocate Gena Brumitt Gruschovnik, whose late mother had a severe recessive form of the condition. The campaign will begin in New York on October 25, and end in California on October 31.
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. This circumstance is caused by a missing or damaged protein that causes a breakdown between skin layers, resulting in skin that can slip off as easily as that of a ripe peach. The disease affects people of both genders and every ethnicity. It is believed that as many as 500,000 people worldwide suffer from one of the forms of EB, and carriers of the mutated gene are more prevalent than one might guess. It is an "orphan disorder," meaning the condition itself 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. Checking wounds for infection is a necessity, so baths and bandaging are a daily occurrence - an ordeal that is often so excruciating that it requires strong pain medication. One ray of hope comes from major event sponsor, RegeneRx, which is doing Phase II clinical testing on Thymosin Beta 4, a multifaceted molecule that influences tissue and organ repair.
The impact of EB on patients and their families is often grueling because they face physical, psychological and economical extremes. One of the greatest concerns is that the public, most healthcare professionals, educators, and the majority of government officials are just now learning about the disorder. The healthcare workers who have experience with it are far and few between, and that reality exacerbates an already challenging existence.
Ms. Gruschovnik is committed to leading a movement that will fundamentally change the present circumstances for EB patients, where physicians don't know how to help, and bandages are not covered by insurance in many states. "The existing situation is a travesty, and while we are extremely thankful for the exceptional doctors and nurses who know our community, they are in short supply. Healthcare workers must be trained to take effective action when they encounter an EB patient! Time and again, they are handled like a regular patient by medical personnel who don't know about EB, and injured by those who are supposed to heal."
Two registered 501(c)3 nonprofit organizations that are tenacious in helping people with EB have joined forces with Gruschovnik: DebRA of America (http://www.debra.org) and the EB Medical Research Foundation (http://www.ebkids.org). Gruschovnik, an American living in Ontario, is on the Board of Directors of DebRA Canada and a Coordinator for DebRA International.
Gruschovnik says, "The objective of the "Walk a Mile in My Shoes" campaign is to build a bridge of compassion, and create a culture of advocacy. We need to change the experiences and the expectations of the EB community, and work in harmony so that effective treatments and a cure are our reality, not just a dream. There are several components to this campaign, and one of them is available for participation to people anywhere in the world!"
- An EB Advocacy Team will travel about 500 miles a day, crossing the U.S. from New York to Stanford, California, sharing EB awareness along the way.
- EB Rallies will be held at Battery Park in New York; Thomas Jefferson University in Philadelphia; Cincinnati Children's Hospital; St. Louis Children's Hospital; Denver Children's Hospital; Covey Center for the Arts in Provo; and finally at Stanford University.
- Associated events are happening throughout America, to raise funds and share about EB.
- On Second Life (http://www.secondlife.com) at Persnickety Isle, a "Walk a Mile in My Shoes" EB Benefit will be happening on October 28 - get into the game and join Epidermolysis Bullosa Butterflies or contact the character Caeleigh Lamington.
What the public can do right now:
- Visit the website to view Route Details and Rally information, and join the EB Advocacy Team where they will slow to a cavalcade of vehicles and walk the remaining miles to destination Rallies, and attend the Rallies to support this initiative;
- Distribute information to clubs, organizations, libraries, businesses, the media, and those in the medical or educational field;
- Contact your government representatives and ask them to issue a public proclamation of National Epidermolysis Bullosa Awareness Week (see website to learn how to do this); and
- Tell everyone you know about this EB awareness campaign, and use viral marketing tools including blogs and social networking sites like MySpace and Facebook, to urge others to visit http://www.ebrelay.org ;
- Donate by sending a check to "Walk a Mile in My Shoes" Relay-Rally, 122 Chalet Crescent, London, Ontario, N6K 3C6, or donate online to DebRA and EBMRF through the website's Network for Good charity badge; and/or
- Join Second Life and participate in the EB Benefit on October 28.
Singer-songwriter Natalie Merchant and Warner/Rhino Records have given approval for the use of Natalie's song "Wonder" to be used as the "Walk a Mile in My Shoes" theme song. "Wonder" is an effective reminder that we are all unique and wonderful miracles, no matter how different we may be from our fellow man.
The media is invited to attend each and every Rally to report on these events. This campaign has received national media coverage in Canada since August, and we seek affiliated representation in the U.S. For local Rally information in the seven destination cities, please contact Coordinators listed on the EB Relay website, or contact Gena Brumitt Gruschovnik, Event Organizer, in regards to national coverage or event details.