Legislation passed in late 2006 created an awareness opportunity for people living with the relatively-unknown genetic disease, Epidermolysis Bullosa. A national event is planned at www.ebrelay.org.
May 23, 2007 (Press Release) --
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 (www.ebrelay.org) 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. The disease affects people of both genders and every ethnicity. Common occurrences can include disfiguring scars and musculoskeletal deformities causing restricted function. It is often disabling and life-threatening, requiring daily wound care similar to that given to acute burn patients. There is no cure.
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. This awareness campaign is supported by DebRA of America and EB Medical Research Foundation, two tenacious nonprofits who are working toward a cure.
The impact of EB on patients and their families can be physically, psychologically and economically devastating. 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.”
The objective of the “Walk a Mile in My Shoes” campaign is to create a culture of advocacy, including:
1. 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;
2. Rallies and press conferences in each day’s destination;
3. Donations to the two primary nonprofit organizations, via a Network for Good website charity badge, which can be accessed now; and
4. Associated spin-off community campaigns, relays and rallies across America.
What the public can do right now:
· Visit www.ebrelay.org, and complete the online forms to participate 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 www.ebrelay.org.
###
Media Contact:
Gena Brumitt Gruschovnik, Founder/Event Organizer
Email: gena@ebrelay.org
Website: www.ebrelay.org
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. Common occurrences can include disfiguring scars and musculoskeletal deformities causing restricted function. It is often disabling and life-threatening, requiring daily wound care similar to that given to acute burn patients. There is no cure.
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. This awareness campaign is supported by DebRA of America and EB Medical Research Foundation, two tenacious nonprofits who are working toward a cure.
The impact of EB on patients and their families can be physically, psychologically and economically devastating. 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.”
The objective of the “Walk a Mile in My Shoes” campaign is to create a culture of advocacy, including:
1. 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;
2. Rallies and press conferences in each day’s destination;
3. Donations to the two primary nonprofit organizations, via a Network for Good website charity badge, which can be accessed now; and
4. Associated spin-off community campaigns, relays and rallies across America.
What the public can do right now:
· Visit www.ebrelay.org, and complete the online forms to participate 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 www.ebrelay.org.
###
Media Contact:
Gena Brumitt Gruschovnik, Founder/Event Organizer
Email: gena@ebrelay.org
Website: www.ebrelay.org
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