CA SJR25

Designates the weekend of June 2-3, 2018, as Batten Disease Awareness Weekend in California.

Batten Disease is a rare genetic nervous system disorder typically beginning in childhood, caused by mutations in at least 14 different genes, occurring in an estimated 2-4 of every 100,000 births in the United States.

The disease causes vision loss, blindness, seizures, intellectual decline, speech loss, dementia, and typically leads to premature death in the late teens or early twenties, with no known cure.

Calls upon the President and Congress of the United States to enact legislation providing increased funding for research on potential treatments and cures for rare diseases.

Notes that 95 percent of the 7,000 rare diseases have no FDA-approved treatment and that the average diagnosis for rare diseases takes 7.6 years with multiple physician visits.