A U X I L I A R Y
N A T I O N A L
P R O J E C T
PRESIDENTS MESSAGE
T his ye a r I ha v e c hos e n a h uma nita r ia n p r oj e c t tha t is ver y s p ec ia l to me. T he
disease is known as Epidermolysis Bullosa or EB. This genetic disease affects one in
every 50,000 live births. EB affects women and men of all races and ethnic groups
EQUALLY. Children having this disease are very special and are often referred to as
"Butterfly Children." Their skin is very fragile and can be damaged with the
s lig hte s t fr i c t ion, thus t he a na log y t o a b ut te r f ly' s w ing s . T her e is no c ur e or
treatment for this disease except for the daily wound care of the blisters and the
open wounds it causes.
debra of America is the only national not -for-profit dedicated to supporting research
initiatives for a c ure or tre atment while p rovid ing s ervices and pr ogra ms to thos e
who suffer from, or care for those who have, EB.
I know a child who has EB. She is a very special even though her life sometimes is
miser able. She often wears a smile and, by obse rving her family, you lea rn a new
meaning for the word LOVE.
Know your s upp or t will b e imp ac tful b ec a us e e ig hty -nine a nd four tenths c ents
(89.4%) of every dollar ($1) raised will be used for the services and the research
for a cure.
DEDICATIONS AND THANKS
This Program of Love is dedicated to all of the Rural Carrier families, and just like the
bouquet of flowers I have chosen...together we make a great family group.
Thanks to my husband, Van, my family and friends for their support.
Very special thanks to my NCRLCA family for their hard work and encouragement.
To all the National Rural Carrier families, thank you for your love and dedication.
MESSAGE FROM debra
We a t deb ra ar e ded ica ted to alle via ting the inher ent da ily str ess of living w ith EB.
No child should ever have to endure such constant pain and suffering. A cure is
close; a clinical tr ial is s howing amaz ing results . H elp us end the s uffer ing E B
causes.
Epidermolysis Bullosa is a rare, genetic, connective tissue disorder. In addition to
extremely fragile skin that blisters and tears with the slightest friction, the list of
manifestations and secondary complications is long. Most children affected with EB will
not live into their third decade of life. As of today, there is no cure or treatment. Imagine
your child living with the "worst disease you never heard of."
EB IS PAINFUL. 70% of a child's body may be an open wound and they may never
heal. Life threatening infections are prevalent. To control them, a bath in diluted
bleach or vinegar and a bandage change may take more than 3 hours.
EB IS PERVASIVE. It affects internal organs as well as the eyes, nose, mouth, throat,
and anus. Some typical complications are: infection, anemia, growth retardation,
inability to swallow, corneal abrasions, cancer, depression, anxiety, malnutrition,
constipation, and premature tooth decay.
EB IS LETHAL. Children often don't live into the 20's.
Brett Kopelan, Executive Director of debra of America
and Father to Rafaella, a 5 year old EB girl