Bill Text: NY K00888 | 2021-2022 | General Assembly | Introduced

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Bill Title: Memorializing Governor Kathy Hochul to proclaim September 15, 2022, as Myotonic Dystrophy Awareness Day in the State of New York

Spectrum: Partisan Bill (Democrat 21-0)

Status: (Passed) 2022-05-11 - adopted [K00888 Detail]

Download: New_York-2021-K00888-Introduced.html

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Assembly Resolution No. 888

BY: M. of A. Rules (Fahy)

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        September 15, 2022, as Myotonic 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 15, 2022, as
Myotonic  Dystrophy  Awareness  Day  in  the  State  of  New  York,   in
conjunction  with  the  observance  of  International Myotonic Dystrophy
Awareness Day; and

  WHEREAS, Myotonic dystrophy is  a  rare,  multi-systemic,  inherited
disease that affects an estimated 1 in 2,100 people, or over 3.6 million
individuals across the world; and

  WHEREAS,  Myotonic  dystrophy  is  commonly  referred  to  as DM, an
abbreviation  of  the  Latin  name  used  by  doctors  and   researchers
worldwide:  dystrophia  myotonica;  other  names for DM include myotonic
muscular dystrophy, Steinert's Disease for DM1,  and  proximal  myotonic
myopathy for DM2; and

  WHEREAS,  Globally,  millions  of  people  are  living with myotonic
dystrophy but do not know they have the disease and are in need of care;
and

  WHEREAS, Myotonic  dystrophy  is  the  most  common  form  of  adult
muscular  dystrophy  and  considered  the  most  variable  of  all known
conditions; and

  WHEREAS, Mutations prevent genes from carrying out  their  functions
properly, which can impact multiple body systems; and

  WHEREAS,   Myotonic  dystrophy  is  inherited;  people  living  with
myotonic dystrophy have a 50% chance of passing on the mutated  gene  to
their children; and

  WHEREAS,  Myotonic  dystrophy  does  not  always  look the same; the
different body systems affected, the severity of symptoms, and  the  age
of onset of those symptoms vary greatly between individuals, even in the
same family; and

  WHEREAS, People living with myotonic dystrophy experience varied and
complex  symptoms,  from  skeletal muscle problems, to heart, breathing,
digestive, hormonal, speech and swallowing, diabetic, immune,  excessive
daytime  sleepiness,  and early cataracts and vision challenges, as well
as cognitive difficulties; and

  WHEREAS, Myotonic dystrophy symptoms usually become more severe with
each generation, yet there  is  currently  no  cure  and  there  are  no
approved treatments; and

  WHEREAS,  Over  35 biopharmaceutical companies are leading promising
research which may result in new treatments for myotonic dystrophy,  and
one day, a cure; and

  WHEREAS,  It  is  imperative that there be greater awareness of this
serious health condition, and more must be done to increase activity  at
the local, state and national levels; now, therefore, be it

  RESOLVED,  That  this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim  September  15,  2022,  as
Myotonic  Dystrophy  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.