FOR IMMEDIATE RELEASE
AUTUMN GIVES RISE TO RAPID BUTTERFLY MIGRATION WEST
FROM NEW YORK TO CALIFORNIA
---"National Epidermolysis Bullosa Awareness Week" Campaign Set to Begin---
New York / Los Angeles / Stanford –
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 (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, a biopharmaceutical company doing Phase II
clinical testing on Thymosin Beta 4, a multifaceted molecule that influences tissue and organ repair.
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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 (
www.debra.org) and the EB Medical Research Foundation
(
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 (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.
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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
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.
Media Contact:
Gena Brumitt Gruschovnik, "Walk a Mile in My Shoes" Relay-Rally
For National Epidermolysis Bullosa Awareness Week 2007
Phone: 519-641-9034
Email: gena@ebrelay.org
Website: www.ebrelay.org