"Walk a Mile in My Shoes" Relay-Rally for National Epidermolysis Bullosa Awareness Week

www.ebrelay.org

"Walk a Mile in My Shoes" Relay-Rally

for

National Epidermolysis Bullosa Awareness Week

Objectives to Promote Awareness

1. Relay across the United States from New York City, NY, to Stanford, CA;

2. Associated cyber-event on Second Life; and

3. Rallies and press conferences in eight destinations:

Support Thus Far

1. Endorsement by DebRA of America and EB Medical Research Foundation, 15+ doctors and nurses

familiar with EB and four EB clinics, dEBra Canada and DebRA International;

2. Team of nine EB advocates crossing the U.S.A. to promote EB awareness;

3. Major donation from RegeneRx to fund signage and T-shirts to give away to participants;

4. In-kind donation from CIVA Communications for video podcast;

5. In-kind donation by Natalie Merchant of her song "Wonder" for EB Relay theme song;

6. BeFriend EB charity donation and assistance;

7. Smaller donations from Tom and Kathy Shannon (Outback Steakhouse), Long Island Sign Factory, Raynil

Inc. and other businesses and individuals;

8. Associated community campaigns planned across the U.S. by a variety of EB advocates;

9. Commitment by Cormier Photography for participation and photo-documentary production;

10. Five hundred educational DVD's created by the Denver Children's Hospital EB Clinic to give away items

to participants and EB clinics;

11. TV news story on WSTM-NBC in Syracuse, NY – July 2007;

12. CBC The National story "Untouchable" about EB and American EB Relay campaign – August 2007;

13. Interest expressed by Doug Jardine of Profiles in Caring to create a Profile on the EB Relay; and

14. Interest expressed by ABC and CBS in Maryland, toward east coast and possible national coverage

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!

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.

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.

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.

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

Two registered 501(c)3 nonprofit organizations that are tenacious in helping people with EB have joined

Canada and a Coordinator for DebRA International.

Stanford, California, sharing EB awareness along the way.

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.

will be happening on October 28 – get into the game and join Epidermolysis Bullosa Butterflies or

contact the character Caeleigh Lamington.

they will slow to a cavalcade of vehicles and walk the remaining miles to destination Rallies, and

attend the Rallies to support this initiative;

educational field;

Epidermolysis Bullosa Awareness Week (see website to learn how to do this); and

Ontario, N6K 3C6, or donate online to DebRA and EBMRF through the website's Network for Good

charity badge; and/or

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.

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