For More
information or to participate please visit:
http://www.ebrelay.org
Epidermolysis Bullosa,
or EB, is a rare genetic disorder. It is not contagious. It affects
people of both genders and every ethnicity throughout the world. As
many as 100,000 people in the U.S. are diagnosed with EB, or are
"carriers" of one of the defective genes that cause EB. Doctors who
work with EB patients have been quoted as saying that EB may be the
worst disease there is, because of the constant pain and suffering.
EB's characteristics: Recurring wounds occur from minor trauma,
shearing or rubbing, similar in appearance and effect to a 2nd or
3rd degree burn; The skin's dermis and epidermis are missing the
anchors that connect the layers, or anchors are damaged, leading to
separation of the skin, chronic wounds, and blistering; In severe
types, scarring results in "mittening" deformities of hands and
feet; loss of body fluids and esophageal scarring leads to anemia
and malnutrition, and impedes normal growth; Every day is filled
with the fear of contacting an infection, and the continual burden
of physical, emotional and financial challenges.
"Walk a Mile in
My Shoes" Relay-Rally is the EB community's first NATIONAL event, in
response to legislation passed by Congress and the Senate in 2006 to
create a National Epidermolysis Bullosa Awareness Week. This
remarkable week is an opportunity to educate and enlighten others
about EB during the last week of October, every year in perpetuity,
beginning in 2007. A special awareness campaign was created by EB
advocate Gena B~miff Gruschovnik, whose late mother had RDEB
Hallopeau-Siemens. Gena will travel on secondary roads across the
United States, accompanied by people who have EB, EB parents and
other EB advocates, from New York to California, Oct. 25 - 31. The
advocacy team will attend daily destination Rallies and press
conferences along the way. YOU can walk, run, bike, wheel, drive, or
traverse the same route (or your own route) however you like (as far
as you like), for awareness and, if you choose, to raise money for
EB nonprofits EB Medical Research Foundation and DebRA of America.
Spin-off Rallies, Relays and community fundraisers will take place
throughout America!
The Purpose of this
Inaugural Event is:
-
To foster
understanding about this devastating genetic disorder;
-
To
educate the public about EB, and encourage the medical community
and our educators to become more familiar with it;
-
To
remember those who suffer, and those whose lives were cut short
by EB;
-
To share
the challenges people with EB and their families experience on a
daily basis; and
-
To
promote greater attention to research, toward a cure and
effective treatments for all three EB types
For More
information or to participate please visit:
http://www.ebrelay.org
“Walk
a Mile in My Shoes” EB
Relay Rally will kick of the first “National Epidermolysis Bullosa
Awareness Week” (October 25th – 31st) event with a ride across the
United States to raise much needed Awareness for EB. Hollye (Young)
Wagner a former resident of Belmont Hills will be making the drive
along with several other EB Advocates. Hollye’s youngest daughter
suffers from this disease.