New York J 945: Memorializing Governor Kathy Hochul to proclaim October 2023, as Dysautonomia Awareness Month in the State of New York

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J00945 Summary:

BILL NOJ00945 

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SAME ASNo Same As

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SPONSORMURRAY

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COSPNSRADDABBO, ASHBY, BAILEY, BASKIN, BORRELLO, BRISPORT, BROUK, BYNOE, CANZONERI-FITZPATRICK, CHAN,
 CLEARE, COMRIE, COONEY, FAHY, FERNANDEZ, GALLIVAN, GIANARIS, GONZALEZ, GOUNARDES, GRIFFO, HARCKHAM,
 HELMING, HINCHEY, HOYLMAN-SIGAL, JACKSON, KAVANAGH, KRUEGER, LANZA, LIU, MARTINEZ, MARTINS,
 MATTERA, MAY, MAYER, MYRIE, OBERACKER, O'MARA, ORTT, PALUMBO, PARKER, PERSAUD, RAMOS, RHOADS,
 RIVERA, ROLISON, RYAN C, RYAN S, SALAZAR, SANDERS, SCARCELLA-SPANTON, SEPULVEDA, SERRANO, SKOUFIS,
 STAVISKY, STEC, STEWART-COUSINS, SUTTON, TEDISCO, WALCZYK, WEBB, WEBER, WEIK

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MLTSPNSR

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Go to top J00945 Actions:

BILL NOJ00945 

&nbsp

05/06/2025REFERRED TO FINANCE

05/13/2025REPORTED TO CALENDAR FOR CONSIDERATION

05/13/2025ADOPTED

Go to topJ00945 Committee&nbspVotes:

Go to topJ00945 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topJ00945 Text:

Senate Resolution No. 945

BY: Senator MURRAY

 MEMORIALIZING Governor Kathy Hochul to proclaim
 July 2025 as MECP2 Duplication Syndrome Awareness
 Month in the State of New York

 WHEREAS, MECP2 duplication syndrome is usually caused by duplication
of DNA on the Xq28 region of the chromosomes; and

 WHEREAS, Despite MECP2 duplication syndrome's being a
neurodevelopmental disorder, it causes multisystemic health problems,
such as severe gastrointestinal symptoms, frequent respiratory
infections, and treatment-resistant seizures; and

 WHEREAS, Some individuals have large duplications which include many
other genes, and the full extent of phenotypes, due to duplication of
other genes, is not completely understood at this time; and

 WHEREAS, Recent studies have shown a link between MECP2 duplication
syndrome and autism, and many with this syndrome do have distinct
features of autism; and

 WHEREAS, Patients with MECP2 duplication syndrome are highly
responsive to proper stimulation such as education, exercise, music,
age-appropriate social interactions, and related activities; and

 WHEREAS, MECP2 duplication syndrome can cause significant anxiety,
depression, and emotional exhaustion for caregivers; and

 WHEREAS, MECP2 duplication syndrome was not formally recognized
until 2005; and

 WHEREAS, MECP2 duplication syndrome research, which has shown that
symptoms of the disorder can be reversed in mice, using a small
anti-sense oligonucleotide, gives hope for the future development of
effective treatments for humans with this disorder; and

 WHEREAS, Clinical readiness studies have been done to identify ways
to monitor response to therapy and ensure safety as a preparation for
future clinical trials; and

 WHEREAS, Natural history studies are ongoing to define the natural
course of MECP2 duplication syndrome over the span of 12-18 months to
prepare for the start of clinical trials; now, therefore, be it

 RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim July 2025 as MECP2
Duplication 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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