New York K 589: Memorializing Governor Andrew M. Cuomo to proclaim September 10-16, 2017, as Direct Support Professionals Recognition Week in the State of New York

Bill Text

Bill Search and Legislative Information | New York State Assembly 

• 

• 

• 

• 

• 

• 

• 

• 

 Skip to main content 

 New York State Assembly

 Speaker Carl E. Heastie

 --> 
 --> 

 --> 

• 
 Assembly Members 

• 
 Legislative Info 

• 
 Public Hearings 

• 
 Speaker's Press 

• 
 Assembly Reports 

• 
 Committees & More 

• Bill Search Home
• Laws
• Legislative Calendar
• Public Hearing Schedule
• Assembly Calendars
• Assembly Committee Agenda 

 Javascript must be enabled to properly view this page. 

 - This bill is not active in this session.

 Bill No.: 

• Summary 
• Actions 
• Committee&nbspVotes 
• Floor&nbspVotes 
• Memo 
• Text 
• LFIN 
• Chamber&nbspVideo/Transcript 
K00589 Summary:

BILL NOK00589 

&nbsp

SAME ASNo Same As

&nbsp

SPONSORRosenthal

&nbsp

COSPNSR

&nbsp

MLTSPNSRAngelino, Brown K, Buttenschon, Carroll P, Fitzpatrick, Gonzalez-Rojas, Griffin, Hyndman, Kay,
 Lasher, Levenberg, Lupardo, Maher, McDonald, Santabarbara, Sayegh, Schiavoni, Seawright, Shimsky,
 Simon

&nbsp

&nbsp

Go to top K00589 Actions:

BILL NOK00589 

&nbsp

05/23/2025referred to calendar

05/27/2025adopted

Go to topK00589 Committee&nbspVotes:

Go to topK00589 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topK00589 Text:

Assembly Resolution No. 589

BY: M. of A. Rosenthal

 MEMORIALIZING Governor Kathy Hochul to proclaim
 October 25-31, 2025, as Epidermolysis Bullosa
 Awareness Week in the State of New York, more
 commonly known as Butterfly Children Awareness Week

 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 Kathy Hochul to proclaim October 25-31, 2025, as Epidermolysis
Bullosa Awareness Week in the State of New York, more commonly known as
Butterfly Children Awareness Week, 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
slightest 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
clothing; many surgical procedures are only performed safely in three or
four hospitals in the United