Bill Text: NY J02465 | 2023-2024 | General Assembly | Introduced

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Bill Title: Governor Kathy Hochul to proclaim September 7, 2024, as Duchenne Muscular Dystrophy Awareness Day in the State of New York

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Passed) 2024-05-21 - ADOPTED [J02465 Detail]

Download: New_York-2023-J02465-Introduced.html

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Senate Resolution No. 2465

BY: Senator THOMAS

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        September 7, 2024, as  Duchenne  Muscular  Dystrophy
        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
illnesses 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 September 7, 2024, as
Duchenne Muscular Dystrophy Awareness Day in the State of New  York,  in
conjunction  with  the  observance  of World Duchenne Muscular Dystrophy
Awareness Day; and

  WHEREAS, Duchenne  muscular  dystrophy  is  the  most  common  fatal
genetic  disorder diagnosed in childhood, affecting approximately one in
every 5,000 male births (about 20,000 new cases  each  year  worldwide);
since  the  Duchenne  gene  is  found  on the X-chromosome, it primarily
affects boys, however, it occurs across all races and cultures; and

  WHEREAS, Duchenne muscular dystrophy results in progressive loss  of
strength  and  is  caused  by  a  mutation  in the gene that encodes for
dystrophin; since dystrophin is absent,  the  muscle  cells  are  easily
damaged; and

  WHEREAS,  The  progressive  muscle weakness leads to serious medical
problems, particularly issues relating to the heart and lungs; young men
with this debilitating disease typically live into their late  twenties;
and

  WHEREAS,  Duchenne  muscular  dystrophy can be passed from parent to
child, but  approximately  35%  of  cases  occur  because  of  a  random
spontaneous mutation; in other words, it can affect anyone; and

  WHEREAS,   Although   there  are  now  seven  FDA  approved  medical
treatments that may help slow its progression,  there  is  currently  no
cure for Duchenne muscular dystrophy; and

  WHEREAS,  World  Duchenne  Muscular  Dystrophy  Awareness  Day  will
highlight the importance of identifying and communicating early signs of
this genetic disorder is the key to early diagnosis; and

  WHEREAS, As one of the first states to add Duchenne to  its  newborn
screening  panel,  New  York continues to be a leader in early diagnosis
and treatment of this disease; now, therefore, be it

  RESOLVED, That this Legislative Body pause in its  deliberations  to
memorialize  Governor  Kathy  Hochul  to  proclaim September 7, 2024, as
Duchenne Muscular Dystrophy Awareness Day in the State of New York;  and
be it further

  RESOLVED,  That  copies  of  this Resolution, suitably engrossed, be
transmitted to The Honorable Kathy Hochul, Governor of the State of  New
York.