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Bill

H 5509

Sam Stockton and Batten Disease Awareness Day

2025-2026 Regular Session Introduced by Terry Alexander and 119 co-sponsors

Designates June 9, 2026 as Batten Disease Awareness Day in South Carolina to raise public awareness and support for affected individuals and research.

Introduced and adopted
0
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Bill Summary · H 5509

Bill Summary — H 5509 (Session 2025-2026, South Carolina)

Title

Sam Stockton and Batten Disease Awareness Day

What the bill is

A House Resolution recognizing Sam Stockton’s battle with Batten disease and designating June 9, 2026, as “Batten Disease Awareness Day” in South Carolina to raise statewide attention to this rare condition.

1) Main purpose and intent

  • To honor Sam Stockton, a South Carolina child diagnosed with Batten disease.
  • To increase public awareness about Batten disease, a form of Neuronal Ceroid Lipofuscinosis (NCL).
  • To align South Carolina with the broader Batten disease awareness efforts led by the Batten Disease Support, Research, and Advocacy (BDSRA) Foundation, which observes International Batten Disease Awareness Day on June 9 each year.

2) Key provisions and changes

  • Proclamation of Batten Disease Awareness Day: June 9, 2026, is proclaimed in South Carolina to highlight the rare, progressive neurological disease and the needs of affected individuals and families.
  • Recognition language: The resolution recognizes the struggle and suffering caused by Batten disease and endorses awareness, research, and funding to combat the condition.
  • Presentation of resolution: A copy of the resolution is to be given to Sam Stockton and his parents, Jordan and Kolby Stockton.

3) Who/what would be affected

  • Affected individuals: Batten disease patients and their families in South Carolina, who would benefit from increased statewide awareness and potential support for research and resources.
  • Public awareness/education: The resolution aims to inform the general public, communities, and policymakers about Batten disease.
  • No new funding, programs, regulatory changes, or administrative duties are created by this resolution. It is primarily a symbolic and awareness-raising measure.

4) Procedural and timeline aspects

  • Action history: Introduced and adopted on April 14, 2026.
  • Effective date: Effective upon adoption of the resolution (symbolic proclamation for June 9, 2026).
  • Scope: This is a state legislative resolution, not a law, so it does not establish new statutory requirements, budgets, or administrative rules.

Additional context

  • Batten disease overview provided in the bill: It is a rare, genetic disorder causing impaired cellular waste disposal in the brain, leading to seizures, vision loss, motor decline, cognitive impairment, and an average life expectancy of 8-12 years.
  • The bill references ongoing treatment challenges, including enzyme replacement and vision-slowing procedures, which illustrate the disease’s seriousness and the need for research and awareness.

If you’d like, I can provide a brief glossary of Batten disease terms or compare this resolution to other Batten disease awareness actions in other states.

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

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