Relative to GM1 Gangliosidosis Awareness Day.

2025-2026 Regular Session Introduced by Juan Alanis and 8 co-sponsors

Designates May 23, 2026 as GM1 Gangliosidosis Awareness Day in California to raise awareness and promote earlier diagnosis and access to care.

Chaptered by Secretary of State. Res. Chapter 76, Statutes of 2026.

#gm1gangliosidosisawarenessday

Purpose and Intent

SCR 148 is a Senate Concurrent Resolution that proclaims May 23, 2026, as GM1 Gangliosidosis Awareness Day in California.

The measure aims to raise public awareness about GM1 Gangliosidosis, a rare inherited neurodegenerative lysosomal storage disorder, and to promote earlier and accurate diagnosis, access to specialized services, genetic counseling, and potential treatments or therapies as available.

Key Provisions and Changes

Designation: Officially designates May 23, 2026, as GM1 Gangliosidosis Awareness Day in California.

Legislative Action: The resolution directs the Secretary of the Senate to transmit copies of SCR 148 to the author for distribution, signaling formal recognition within state government.

Public Awareness Objective: Although non-binding, the resolution emphasizes the importance of awareness to combat underdiagnosis and misdiagnosis and to improve access to rehabilitation, support, and medical management for affected individuals and families.

Who and What Would Be Affected

Geographic/ Jurisdiction: California.

Individuals and Groups Affected: People with GM1 Gangliosidosis and their families, clinicians, genetic counselors, patient advocacy groups, and state agencies involved in health information dissemination and support services.

The impact is primarily educational and symbolic, aiming to galvanize awareness among healthcare professionals, educators, and the general public to support timely diagnosis and appropriate care.

Procedural and Timeline Aspects

Introduction and Action: Introduced in March 2026; passed through the appropriate legislative committees and chambers in May 2026.

Enactment Status: Enrolled and filed with the Secretary of State on May 29, 2026; Chaptered as Chapter 76, Statutes of 2026.

Public Communication: Requires transmission of the resolution to the author for distribution, enabling dissemination of the recognition across relevant stakeholders.

Context and Considerations

Background: GM1 Gangliosidosis is rare (estimated at 1 in 100,000 to 200,000 live births) and often underdiagnosed or misdiagnosed, leading to delays in management and access to services.

Limitations: As a concurrent resolution, SCR 148 does not create new law or funding; it expresses the Legislature’s recognition and intention to raise awareness.

If you’d like, I can add a brief glossary of GM1 Gangliosidosis terms or compare SCR 148 to similar awareness observances in California.

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