This measure would declare May 23, 2024, as GM1 Gangliosidosis Awareness Day in California.
Digest Key
Fiscal Committee:
NO
Bill Text
WHEREAS, GM1 Gangliosidosis is a rare inherited disease that results in neurodegeneration and a progressive loss of abilities until death, leaving children, adolescents, and adults impaired with significant physical and developmental disabilities; and
WHEREAS, GM1 Gangliosidosis is severely underdiagnosed and misdiagnosed and occurs in only one in every 100,000 to 200,000 live births; and
WHEREAS, Lack of public awareness and visibility of GM1 Gangliosidosis contributes to underdiagnosis and difficulties in accessing specialized services and proper rehabilitation and support; and
WHEREAS, Early diagnosis of GM1 Gangliosidosis is important to ensure timely management of clinical complications, genetic counseling, and, when available, treatment and therapeutic remedies; and
WHEREAS, The goal is to raise awareness and increase the accurate and timely diagnosis of this rare inherited lysosomal disorder known as GM1 Gangliosidosis; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature declares May 23, 2024, as GM1 Gangliosidosis Awareness Day in California; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.