HOUSE DOCKET, NO. 2499        FILED ON: 1/16/2025

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The Commonwealth of Massachusetts

_________________

PRESENTED BY:

Kristin E. Kassner and Bruce E. Tarr

_________________

To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General
Court assembled:

The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill:

An Act designating April 5 as Okur-Chung Neurodevelopmental Syndrome Awareness Day.

_______________

PETITION OF:

 

Name:

District/Address:

Date Added:

Kristin E. Kassner

2nd Essex

1/11/2025

Bruce E. Tarr

First Essex and Middlesex

1/15/2025

Jillian Kavanagh

33 Crescent Road, Hamilton, MA 01982

1/11/2025


HOUSE DOCKET, NO. 2499        FILED ON: 1/16/2025

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[Pin Slip]

 

[SIMILAR MATTER FILED IN PREVIOUS SESSION
SEE HOUSE, NO. 4070 OF 2023-2024.]

 

The Commonwealth of Massachusetts

 

_______________

In the One Hundred and Ninety-Fourth General Court
(2025-2026)

_______________

 

An Act designating April 5 as Okur-Chung Neurodevelopmental Syndrome Awareness Day.

 

Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority of the same, as follows:
 

Chapter 6 of the General Laws, as appearing in the 2022 Official Edition, is hereby amended by inserting after section 15ZZZZZZ, the following section:-

Section 15AAAAAAA. The governor shall annually issue a proclamation setting apart April 5 as Okur-Chung Neurodevelopmental Syndrome (OCNDS) Awareness Day, to raise awareness of this rare genetic disorder caused by heterozygous mutations in the CSNK2A1 gene on chromosome 20 and manifesting as developmental delay or differences in brain function, which can be managed with early therapy, and recommending that the day be observed in an appropriate manner by the people.