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J01427 Summary:

BILL NOJ01427
 
SAME ASNo Same As
 
SPONSORPARKER
 
COSPNSR
 
MLTSPNSR
 
 
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J01427 Text:

 
Senate Resolution No. 1427
 
BY: Senator PARKER
 
        RECOGNIZING  June  2026,  as Scleroderma Awareness
        Month in the State of New York
 
  WHEREAS, It is the sense of this Legislative Body to  recognize  the
importance  of  health  awareness  campaigns  that  educate  the public,
advance understanding  of  disease,  support  affected  individuals  and
families,  and  foster  research for improved diagnosis, treatment, and,
ultimately, cures; and
 
  WHEREAS, Attendant to such concern, and  in  full  accord  with  its
long-standing  traditions,  this  Legislative  Body  is  justly proud to
recognize June 2026, as Scleroderma Awareness Month in the State of  New
York; and
 
  WHEREAS,  June  is designated as Scleroderma Awareness Month, a time
when advocates, healthcare providers, researchers, patients, caregivers,
and communities across the  Nation  unite  to  elevate  awareness  about
scleroderma,  a  rare  autoimmune  condition  characterized  by abnormal
connective tissue growth that can affect the skin,  blood  vessels,  and
internal organs; and
 
  WHEREAS,  Scleroderma  encompasses  a  group  of  related disorders,
including localized forms that  affect  mainly  the  skin  and  systemic
sclerosis  that can affect internal organs, each involving immune system
dysfunction, fibrosis, vascular abnormalities, and serious complications
such as pulmonary hypertension and interstitial lung disease; and
 
  WHEREAS, Scleroderma's clinical  presentation  is  varied,  and  its
diagnosis  can  be  challenging  because  symptoms  overlap  with  other
conditions; there is  currently  no  known  cure  for  scleroderma,  and
management  focuses on symptom control, organ protection, and supportive
care; and
 
  WHEREAS, In the United States, more than 300,000 people live with  a
form of scleroderma, and the disease can affect individuals of all ages,
genders,  and backgrounds; awareness and early intervention are critical
to improving quality of life and clinical outcomes for  those  affected;
and
 
  WHEREAS,  Research  indicates  that  scleroderma  disproportionately
affects Black individuals in ways that result  in  more  severe  disease
symptoms  and  poorer outcomes, including earlier age of onset, a higher
frequency of the diffuse cutaneous form of systemic sclerosis, increased
risk of organ involvement, and higher mortality rates when  compared  to
white   populations;   this  discrepancy  warrants  continued  research,
outreach, and culturally competent care; and
 
  WHEREAS,  Awareness  efforts  during  Scleroderma  Awareness   Month
include  national  and local campaigns, educational programming, support
group activities, community events, support services  for  patients  and
families,   and   opportunities   for   public  acknowledgment  such  as
proclamations,  teal  awareness  lighting  initiatives,  and   community
dialogues; and
 
 
  WHEREAS,  The  National  Scleroderma  Foundation serves as a leading
force  in  raising  awareness,  providing  education  and   support   to
individuals  and families, advocating for improved care, and fostering a
nationwide network of support groups, including a Black, Indigenous, and
People  of  Color  (BIPOC)  scleroderma   support   group   to   address
community-specific needs and experiences; and
 
  WHEREAS, The Scleroderma Research Foundation is a national nonprofit
organization  dedicated to funding and advancing high-quality scientific
research on scleroderma with the goal of discovering  better  treatments
and  ultimately  a  cure,  supporting  clinical  study  initiatives  and
collaboration among top researchers and institutions; and
 
  WHEREAS,  During  Scleroderma  Awareness  Month,   communities   are
encouraged  to learn more about this rare autoimmune disease, to support
individuals living with scleroderma, to  participate  in  awareness  and
fundraising  activities,  and  to  promote  equitable access to clinical
care,  education,  and  research  opportunities  for  all,  particularly
populations  that have experienced disproportionate disease burden; now,
therefore, be it
 
  RESOLVED, That  this  Legislative  Body  recognizes  June  2026,  as
Scleroderma  Awareness  Month in the State of New York and reaffirms its
commitment to raising public  awareness  about  scleroderma,  supporting
affected individuals and families, advancing research and education, and
addressing  health  disparities that affect Black and Brown communities;
and be it further
 
  RESOLVED, That copies of this  Resolution,  suitably  engrossed,  be
transmitted  to  the National Scleroderma Foundation and the Scleroderma
Research Foundation in recognition of their leadership  and  service  in
support of the scleroderma community.
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