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| 2 | 2 | | HOUSE DOCKET, NO. 2499 FILED ON: 1/16/2025 |
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| 3 | 3 | | HOUSE . . . . . . . . . . . . . . . No. 3366 |
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| 4 | 4 | | The Commonwealth of Massachusetts |
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| 5 | 5 | | _________________ |
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| 6 | 6 | | PRESENTED BY: |
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| 7 | 7 | | Kristin E. Kassner and Bruce E. Tarr |
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| 8 | 8 | | _________________ |
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| 9 | 9 | | To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General |
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| 10 | 10 | | Court assembled: |
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| 11 | 11 | | The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill: |
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| 12 | 12 | | An Act designating April 5 as Okur-Chung Neurodevelopmental Syndrome Awareness Day. |
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| 13 | 13 | | _______________ |
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| 14 | 14 | | PETITION OF: |
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| 15 | 15 | | NAME:DISTRICT/ADDRESS :DATE ADDED:Kristin E. Kassner2nd Essex1/16/2025Bruce E. TarrFirst Essex and Middlesex1/16/2025Jillian Kavanagh33 Crescent Road, Hamilton, MA |
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| 16 | 16 | | 01982 |
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| 17 | 17 | | 1/16/2025Christopher Hendricks11th Bristol1/23/2025 1 of 1 |
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| 18 | 18 | | HOUSE DOCKET, NO. 2499 FILED ON: 1/16/2025 |
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| 19 | 19 | | HOUSE . . . . . . . . . . . . . . . No. 3366 |
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| 20 | 20 | | By Representative Kassner of Hamilton and Senator Tarr, a joint petition (accompanied by bill, |
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| 21 | 21 | | House, No. 3366) of Kristin E. Kassner, Bruce E. Tarr and others for the issuance of an annual |
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| 22 | 22 | | proclamation by the Governor to designate April 5 as Okur-Chung Neurodevelopmental |
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| 23 | 23 | | Syndrome awareness day. State Administration and Regulatory Oversight. |
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| 24 | 24 | | [SIMILAR MATTER FILED IN PREVIOUS SESSION |
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| 25 | 25 | | SEE HOUSE, NO. 4070 OF 2023-2024.] |
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| 26 | 26 | | The Commonwealth of Massachusetts |
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| 27 | 27 | | _______________ |
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| 28 | 28 | | In the One Hundred and Ninety-Fourth General Court |
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| 29 | 29 | | (2025-2026) |
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| 30 | 30 | | _______________ |
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| 31 | 31 | | An Act designating April 5 as Okur-Chung Neurodevelopmental Syndrome Awareness Day. |
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| 32 | 32 | | Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority |
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| 33 | 33 | | of the same, as follows: |
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| 34 | 34 | | 1 Chapter 6 of the General Laws, as appearing in the 2022 Official Edition, is hereby |
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| 35 | 35 | | 2amended by inserting after section 15ZZZZZZ, the following section:- |
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| 36 | 36 | | 3 Section 15AAAAAAA. The governor shall annually issue a proclamation setting apart |
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| 37 | 37 | | 4April 5 as Okur-Chung Neurodevelopmental Syndrome (OCNDS) Awareness Day, to raise |
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| 38 | 38 | | 5awareness of this rare genetic disorder caused by heterozygous mutations in the CSNK2A1 gene |
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| 39 | 39 | | 6on chromosome 20 and manifesting as developmental delay or differences in brain function, |
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| 40 | 40 | | 7which can be managed with early therapy, and recommending that the day be observed in an |
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| 41 | 41 | | 8appropriate manner by the people. |
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