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CA SR119

Resolution

Status

Passed

8/16/2018

Primary Sponsor

Jean Fuller

Click for details

Origin

Senate

2017-2018 Session

AI Summary

  • Proclaims November 2018 as Adrenoleukodystrophy Awareness Month in California.

  • X-linked adrenoleukodystrophy (X-ALD) is a genetic disorder affecting an estimated one in 20,000 to 50,000 individuals worldwide, with men most severely affected due to having only one X chromosome.

  • The childhood cerebral form onset occurs between ages four and 10, causing behavioral changes, memory loss, learning disabilities, seizures, and progressive dementia, typically resulting in death one to 10 years after symptom onset.

  • Adult-onset adrenomyeloneuropathy (AMN) typically begins between ages 21 and 35 with progressive weakness and paralysis of lower limbs, while almost half of female carriers develop milder AMN symptoms.

  • Treatment includes adrenal hormone therapy, newborn screening, physical therapy, psychological support, and bone marrow transplantation if performed early, with "Lorenzo's Oil" showing potential to prevent or delay childhood cerebral symptoms.

Legislative Description

Relative to Adrenoleukodystrophy Awareness Month

Last Action

Read. Adopted. (Ayes 38. Noes 0. Page 5334.)

8/16/2018

Committee Referrals

Rules7/2/2018

Full Bill Text

No bill text available