Bill Text: NY K00454 | 2023-2024 | General Assembly | Introduced


Bill Title: Memorializing Governor Kathy Hochul to proclaim October 2023, as Rett Syndrome Awareness Month in the State of New York

Spectrum: Bipartisan Bill

Status: (Passed) 2023-05-15 - adopted [K00454 Detail]

Download: New_York-2023-K00454-Introduced.html

Assembly Resolution No. 454

BY: M. of A. McDonald

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        October 2023, as Rett Syndrome  Awareness  Month  in
        the State of New York

  WHEREAS,  The  State  of  New  York takes great pride in recognizing
official months established to  increase  awareness  of  serious  health
issues that affect the lives of all New Yorkers; and

  WHEREAS,  This  Legislative  Body  is  justly  proud  to memorialize
Governor Kathy  Hochul  to  proclaim  October  2023,  as  Rett  Syndrome
Awareness  Month  in  the  State  of  New  York, in conjunction with the
observance of National Rett Syndrome Awareness Month; and

  WHEREAS, Rett syndrome is a postnatal genetic neurological  disorder
that occurs primarily in females and rarely in males; and

  WHEREAS,  Symptoms  in  children usually do not appear until 6 to 18
months, and a regression  period  leads  to  lifelong  impairments  with
multiple  dysfunctions:  speech is lost, seizures can develop, scoliosis
occurs, many develop irregular breathing patterns, and more than half of
the people with Rett syndrome lose their ability to walk;  the  hallmark
sign  of  Rett  syndrome is near constant retentive hand movements while
awake; and

  WHEREAS,  Those  diagnosed  with  Rett  syndrome   require   maximum
assistance  with  daily  living activities; however, the disorder is not
degenerative,  and  biomedical  research  suggests   that   neurological
symptoms may be reversed even after decades of severe symptoms; and

  WHEREAS,  With  the discovery of the gene that causes Rett syndrome,
research in the lab proves the theory of reversibility of  the  disease,
the discovery of breakthrough testing in vitro models, and the launch of
multiple disease-modifying human clinical trials; we have now reached an
unprecedented  and  historic  moment in time where we must do everything
possible to fund the truly life-changing research in front of us; and

  WHEREAS, It is imperative that there be greater  awareness  of  this
serious  health  condition,  and  more must be done to increase activity
within the medical community, therapists, teachers, caregivers, and  the
general  public as well, and it is important for funding to be available
for researchers who are dedicated to finding a cure for  Rett  syndrome;
through  these  efforts,  it  is possible to create a world without Rett
syndrome; now, therefore, be it

  RESOLVED, That this Legislative Body pause in its  deliberations  to
memorialize  Governor  Kathy  Hochul  to  proclaim October 2023, as Rett
Syndrome Awareness Month 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.
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