2025-J282
      
             
Senate Resolution No. 282
 
BY: Senator MURRAY
 
        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        June 30, 2025, as Arthrogryposis  Awareness  Day  in
        the State of New York
 
  WHEREAS,  It  is  the  custom  of this Legislative Body to recognize
official days that are set aside to increase awareness of serious health
conditions that affect the lives of citizens of New York State; and
 
  WHEREAS, Attendant to such concern, and  in  full  accord  with  its
long-standing  traditions,  this  Legislative  Body  is  justly proud to
memorialize  Governor  Kathy  Hochul  to  proclaim  June  30,  2025,  as
Arthrogryposis Awareness Day in the State of New York; and
 
  WHEREAS,   Arthrogryposis   Multiplex  Congenita  (AMC)  is  a  rare
condition that occurs in utero where there are multiple congenital (from
birth) joint contractures, or multiple joints  that  are  stuck  in  one
position and have very little flexibility, resulting in low muscle tone;
and
 
  WHEREAS,  Translated,  arthro  means  joint, gryposis means crooked,
multiplex means multiple, and  congenita  means  existing  at  birth  or
present at birth; and
 
  WHEREAS, Arthrogryposis is an umbrella diagnosis with many syndromes
and  subtypes  and occurs 1 in 3,000 live births; AMC is non-progressive
but the contractures can recur after treatment; furthermore, all joints,
including the spine and the jaw, can be affected; and
 
  WHEREAS, Currently, there are 400 identified types of Arthrogryposis
such as Amyoplasia and Distal; some individuals never have their type of
Arthrogryposis identified; and
 
  WHEREAS, Most distal Arthrogryposis types and most  syndromes  (like
Escobar, Sheldon-Hall) are genetic in origin; 20-30% of babies born with
AMC  will  die  in the newborn period because they have a lethal genetic
type or they have severe central nervous system dysfunction; and
 
  WHEREAS, Approximately 1/3 of cases of AMC are amyoplasia type which
is non-genetic and sporadic in the population; and
 
  WHEREAS, The cause of Arthrogryposis is not fully known at this time
but may be due to an  unborn  baby  not  moving  properly  during  fetal
development; movement is vital to proper joint development; and
 
  WHEREAS, Common joint contractures include: clubbed feet or vertical
talus,  extended  or  flexed knees, dislocated and/or externally rotated
hips, internally rotated shoulders, extended or  flexed  elbows,  flexed
wrists,  adducted  thumbs  (stuck-in-palm),  and  fingers  are fisted or
extended; and
 
  WHEREAS, While there is no  cure  for  AMC,  stretching  the  joints
multiple  times  per  day,  serial casting, various therapies (physical,
occupational, and  speech),  splinting,  bracing,  tendon  releases  and
 
lengthening,  osteotomies  (bone  cuts),  and external fixators can help
improve a person's independence level and quality of life; and
 
  WHEREAS,  Despite  the  fact there is no cure for AMC, most children
with Arthrogryposis grow up to be independent and successful adults; and
 
  WHEREAS, On June 30, 2025, families across the State of New York and
the Nation will be wearing the color blue to  honor  those  affected  by
Arthrogryposis; and
 
  WHEREAS,    Increased    awareness   and   expanded   knowledge   of
Arthrogryposis, as well as its impact on the quality of  life  of  those
affected, will allow the community-at-large to better support people who
struggle with the challenges of this disorder; now, therefore, be it
 
  RESOLVED,  That  this Legislative Body pause in its deliberations to
memorialize  Governor  Kathy  Hochul  to  proclaim  June  30,  2025,  as
Arthrogryposis Awareness Day in the State of New York; and be it further
 
  RESOLVED,  That  a  copy  of this Resolution, suitably engrossed, be
transmitted to The Honorable Kathy Hochul, Governor of the State of  New
York.