Bill Text: NY J00560 | 2021-2022 | General Assembly | Introduced

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Bill Title: Memorializing Governor Andrew M. Cuomo to proclaim June 9, 2021, as Batten Disease Awareness Day in the State of New York

Spectrum: Partisan Bill (Republican 1-0)

Status: (Passed) 2021-03-31 - ADOPTED [J00560 Detail]

Download: New_York-2021-J00560-Introduced.html

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Senate Resolution No. 560

BY: Senator LANZA

        MEMORIALIZING Governor Andrew M. Cuomo to proclaim
        June 9, 2021, as Batten Disease 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 Andrew M. Cuomo to proclaim June 9, 2021, as Batten
Disease  Awareness Day in the State of New York, in conjunction with the
observance of International Batten Disease Awareness Day; and

  WHEREAS,       Batten       Disease,       also       known       as
Spielmeyer-Vogt-Sjogren-Batten Disease, is an extremely rare, fatal, and
inherited  disorder  of  the  nervous  system  which  usually  begins in
childhood between the ages of five and ten; out of every 100,000  babies
born  in  the United States, it is estimated about two to four have this
disease that is passed down through families; and

  WHEREAS, These nervous system disorders are called  neuronal  ceroid
lipofuscinosis (NCLs) which get worse over time; and

  WHEREAS,  There  are  four  different  types:  Congenital  NCL which
affects babies  and  can  cause  them  to  be  born  with  seizures  and
abnormally  small  heads;  Infantile NCL (INCL) usually shows up between
the ages of six months and two years, and  can  cause  microcephaly,  as
well  as  sharp  contractions in the muscles; Late Infantile NCL (LINCL)
typically starts between the ages of two and  four  with  symptoms  like
seizures  that  do not get better with medication, and includes the loss
of muscle coordination; and Adult NCL (ANCL) which starts before the age
of 40; unfortunately, all types lead to premature death; and

  WHEREAS, Buildup of fatty substances, called  lipopigments,  in  the
cells  of the brain, central nervous system and retina in the eye causes
seizures, cognitive decline, loss of eyesight, speech, and mobility; and

  WHEREAS, Batten  Disease  was  first  recognized  in  1903,  by  Dr.
Frederick  Batten,  however,  the  first  genes  causing Neuronal Ceroid
Lipofuscinosis were not identified until 1995; and

  WHEREAS, Although there  is  currently  no  known  cure  for  Batten
Disease,   some   symptoms,  such  as  seizures,  can  be  treated  with
medication, and treatment for one of the forms (CLN2 disease)  has  been
approved by the United States Food and Drug Administration; and

  WHEREAS,  Founded  in  Spanaway, Washington, by Judith A. Grant, the
Batten Disease Support and Research Association (BDSRA) is  the  largest
support  and  research  organization  dedicated  to  all forms of Batten
Disease in North America; and

  WHEREAS, The Batten Disease Registry was established in 1987 at  the
NYS  Institute  for  Basic  Research  in  Staten  Island,  as a national
database for  individuals  with  Batten  Disease  for  researchers,  and
remained  there  until  2019  before  being  moved to the national BDSRA
office in Ohio; and

  WHEREAS,  The Metro NY/NJ Chapter of BDSRA was formed in 2001, after
recognizing there were several families in the Metro area with  children
stricken by Batten Disease; and

  WHEREAS,  BDSRA  helps  to  provide the following to those afflicted
with this uncurable disease and their families by organizing  an  annual
conference,  and  providing monthly e-newsletter and email alerts, phone
consultations to find community resources and  provide  support,  closed
Facebook  group  for  parents  and  caregivers, "Ask-an-Expert" Facebook
chats, outreach  to  bereaved  parents,  educational  consultations  and
advocacy and referrals for carrier/genetic testing; 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 Andrew M. Cuomo to proclaim June 9, 2021, as Batten
Disease 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 Andrew M. Cuomo, Governor of the State of
New York, and the Metro NY/NJ Chapter of BDSRA.