LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim October 25, 2016, as Epidermolysis Bullosa Awareness Day in the
State of New York, more commonly known as Butterfly Children Awareness
Day

WHEREAS, It is the custom of this Legislative Body to recognize official
days that are set aside to increase awareness of serious issues that
affect the lives of the citizens of New York State; and
WHEREAS, It is the sense of this Legislative Body to memorialize
Governor Andrew M. Cuomo to proclaim October 25, 2016, as Epidermolysis
Bullosa Awareness Day in the State of New York, more commonly known as
Butterfly Children Awareness Day, in an effort to raise public awareness
and understanding of Epidermolysis Bullosa; and
WHEREAS, Epidermolysis Bullosa (EB) is a rare, genetic, connective
tissue disorder that is characterized by fragile skin and recurrent
blister formation, inside and outside the body; today, there is no cure;
and
WHEREAS, Severe forms of EB cause patients to live with constant pain
and scarring; the worst forms of EB lead to eventual disfigurement,
disability and often early death; phenotypes and outcomes run the gamut,
from mild to severe; the more severe cases cause fatalities in the first
year of life, and in many cases, children who suffer from the more
severe forms do not live into their third decade of life; and
WHEREAS, There are five types of EB: EB simplex (EBS), Junctional EB
(JEB), Dystrophic EB (DEB), Kindler EB (KEB) and EB Acquisita (EBA); EBS
is the most common form of EB, while the other forms are relatively less
common and affect the patient more severely; and
WHEREAS, The presence and type of EB is differentiated by the gene
that is affected, and the particular protein that is produced by that
gene, therefore, EB can be the result of a mutation in genes that
produce one of 18 different structural proteins; and
WHEREAS, It has been estimated that one out of every 20,000 live
births which is approximately 200 children a year, is affected with some
type of EB; the disorder occurs in every racial and ethnic group
throughout the world and affects both sexes equally; and
WHEREAS, The only treatment for EB is daily wound care, preventative
bandaging and pain management; the simple act of bathing is a tortuous
process that may take more than three hours when children are often
bathed in a diluted bleach or vinegar solution to fight the ever present
threat of infection; and
WHEREAS, EB has a long list of secondary complications including
anemia, growth retardation, infection, bacterial sepsis, renal failure,
cardiomyopathy, corneal abrasions, malnutrition, premature tooth decay
and squamous cell carcinoma; and
WHEREAS, With skin as fragile as a butterfly wing, EB patients are
dubbed "Butterfly Children"; on the outside, physical wounds prevent
them from normal daily activities enjoyed by other children; the slight-
est friction produces agonizing wounds that can cover up to 75% of their
bodies; and
WHEREAS, There is a frightening lack of institutional knowledge; in
other words, most physicians, nationally and internationally, are
unaware of the disorder and its complexities, thus resulting in less
than optimal treatment options for even the most common secondary
complications; and
WHEREAS, Due to public and private insurance coverage limitations,
caregivers may lack adequate wound care supplies that are essential in
not only preventing infection and supporting wound closure, but also

preventing new wounds from everyday activities, such as wearing cloth-
ing; many surgical procedures are only performed safely in three or four
hospitals in the United States; and
WHEREAS, Researchers from around the globe are investigating new ther-
apies to treat and cure EB, thereby leading to a better quality of life;
and
WHEREAS, Eight-year-old Butterfly Child, Rafaella (Rafi) Lily Kopelan
was diagnosed with a severe form of Recessive Dystrophic Epidermolysis
Bullosa at birth; and
WHEREAS, Rafi Kopelan was the eighth in the world to undergo a stem
cell transplant as part of a clinical trial to treat her EB, which has
led to her ability to produce the protein (collagen type VII) which she
was unable to produce before the procedure; and
WHEREAS, "Rafi's Run" was held on March 6, 2016, in Riverside Park to
provide financial support for the research into a cure for EB, in an
effort to aid Rafi Kopelan and other Butterfly Children; and
WHEREAS, Easton Friedel, nicknamed "Baby Easton" of Weedsport, New
York, diagnosed with EB at birth, joined by his supportive parents, is
educating the public and spreading awareness of this rare disorder; and
WHEREAS, Easton, who is about to turn four, is not wearing bandages
anymore on a regular basis; this is remarkable progress for a child who
once could barely be held for very long because his skin was so fragile
and it blistered very easily; and
WHEREAS, He is now walking on his own, thanks in part to a morphine
topical cream that is applied once a day to help with the pain of blis-
tered feet; they are preparing him to be in a traditional class room
when he goes to pre-K in September; in addition, he has a teacher who
comes to his home in Weedsport, New York four times a week; and
WHEREAS, Easton's parents, Danielle and Jared Friedel, and the entire
Friedel family were recently honored by the Dystrophic Epidermolysis
Bullosa Research Association of America (DEBRA), the only national
organization with the stated purpose of funding research and a cure for
EB, with the first ever EB Awareness Award for their outreach work; and
WHEREAS, It is imperative that there be greater public awareness of
this serious health issue, and more must be done to increase activity at
the local, State and national levels to support the patients as well as
their families; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim October 25, 2016, as
Epidermolysis Bullosa Awareness Day in the State of New York, more
.SO DOC A R1521 RESO TEXT 2015
commonly known as Butterfly Children Awareness Day; and be it further
RESOLVED, That a copy of this Resolution, suitably engrossed, be tran-
smitted to The Honorable Andrew M. Cuomo, Governor of the State of New
York.