Pennsylvania SR 181: A Resolution commemorating the 283rd anniversary of "Schwenkfelder Thanksgiving Day" on September 24, 2017, in Pennsylvania.

Bill Text

PRINTER'S NO. 1272
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No. 181
Session of
2025
INTRODUCED BY J. WARD, FONTANA, MARTIN, PHILLIPS-HILL, BROWN,
HUGHES, CULVER, HAYWOOD AND STEFANO, OCTOBER 24, 2025
REFERRED TO RULES AND EXECUTIVE NOMINATIONS, OCTOBER 24, 2025
A RESOLUTION
Designating the week of October 25 through 31, 2025, as
"Epidermolysis Bullosa Awareness Week" in Pennsylvania.
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,
for which there is no cure; and
WHEREAS, Severe forms of EB cause patients to live with
constant pain and scarring and the worst forms of EB lead to
eventual disfigurement, disability and often early death; and
WHEREAS, Phenotypes and outcomes for EB run the full scope,
from mild to severe, and 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); and
WHEREAS, EBS is the most common form of EB, while the other
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18

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 1 of 18 different structural
proteins; and
WHEREAS, It has been estimated that 1 out of every 20,000
births, which is approximately 200 children a year, is affected
with some type of EB, and the disorder occurs in every group
throughout the world and affects both sexes equally; and
WHEREAS, With skin as fragile as a butterfly wing, EB
patients are dubbed "Butterfly Children" because on the outside,
physical wounds prevent them from normal daily activities
enjoyed by other children and the slightest friction produces
agonizing wounds that can cover up to 75% of their bodies; and
WHEREAS, Unfortunately, there is a lack of long-term research
surrounding EB, 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, Researchers from around the globe are investigating
new therapies to treat and cure EB, thereby leading to a better
quality of life; and
WHEREAS, It is imperative that there is a greater public
awareness of this serious health issue and more must be done to
increase activity at the national, State and local levels to
support the patients as well as their families; therefore be it
RESOLVED, That the Senate designate the week of October 25
through 31, 2025, as "Epidermolysis Bullosa Awareness Week" in
20250SR0181PN1272 - 2 -
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30

Pennsylvania, more commonly known as "Butterfly Children
Awareness Week"; and be it further
RESOLVED, That the Senate join families and individuals
across this Commonwealth who are impacted by Epidermolysis
Bullosa in raising awareness and understanding.
20250SR0181PN1272 - 3 -
1
2
3
4
5