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HD 2499

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

194th Legislature (2025-2026) Introduced by Chris Hendricks and 2 co-sponsors

Designate April 5 as Okur-Chung Neurodevelopmental Syndrome Awareness Day with annual gubernatorial proclamations to raise public awareness and understanding.

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Bill Summary · HD 2499

Summary of House Bill HD 2499 (Okur-Chung Neurodevelopmental Syndrome Awareness Day)

Overview

HD 2499 is a proposed Massachusetts bill titled “An Act designating April 5 as Okur-Chung Neurodevelopmental Syndrome Awareness Day.” The measure would require an annual gubernatorial proclamation recognizing April 5 as OC Neurodevelopmental Syndrome (OCNDS) Awareness Day to raise awareness of the rare genetic disorder.

Purpose and intent

  • Establish a formal statewide recognition of Okur-Chung Neurodevelopmental Syndrome (OCNDS) to promote awareness and education about the condition.
  • Emphasize that OCNDS is caused by heterozygous mutations in the CSNK2A1 gene on chromosome 20 and that early therapy can help manage developmental delay or differences in brain function.

Key provisions

  • Insertion of a new statutory section (Section 15AAAAAAA) into Chapter 6 of the General Laws.
  • The Governor shall annually issue a proclamation designating April 5 as Okur-Chung Neurodevelopmental Syndrome Awareness Day.
  • The proclamation should aim to raise awareness of OCNDS and recommend an appropriate observance by the people of the Commonwealth.
  • The bill specifies the disorder’s genetic basis (CSNK2A1 on chromosome 20) and its clinical implications (developmental delay or differences in brain function, manageable with early therapy).

Affected parties and impacts

  • Individuals and families affected by OCNDS, as well as healthcare and advocacy communities, would benefit from heightened public awareness.
  • State government (Governor’s office) would engage in annual proclamations without creating new funding or program obligations.
  • The general public would gain increased awareness and understanding of OCNDS.

Timelines and procedural notes

  • The bill would take effect through annual gubernatorial proclamations once enacted.
  • It designates April 5 each year for observance.
  • Status in the provided materials indicates a 2025-2026 session presentation, with previous related filings in 2023-24 (House No. 4070). The record here shows a joint petition by Kassner (representative) and Tarr (senator) for House No. 3366.

Fiscal and administrative considerations

  • No explicit funding or programmatic appropriations are included.
  • Observance would be an administrative action by the Governor’s office (proclamations), not a new state program.

Context

  • This is a continued effort in Massachusetts to designate an awareness day for a rare genetic disorder, with prior related filings in a prior session. OCNDs awareness aligns with broader health-awareness designations that rely on annual proclamations rather than new regulatory duties.

Compiled from official sources — confirm details with the bill’s official record.

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