BILL ANALYSIS                                                                                                                                                                                                    Ó



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          Date of Hearing:   August 29, 2016


                             ASSEMBLY COMMITTEE ON RULES


                              Richard S. Gordon, Chair


          SCR  
                      162 (Fuller) - As Introduced August 3, 2016


          SENATE VOTE:  36-0


          SUBJECT:  Adrenoleukodystrophy Awareness Month


          SUMMARY:  Memorializes the month of November 2016 as  
          Adrenoleukodystrophy Awareness Month.  Specifically, this  
          resolution makes the following legislative findings: 


          1.X-linked adrenoleukodystrophy (X-ALD) is one of a group of  
            genetic disorders called the leukodystrophies that cause  
            damage to the myelin sheath, an insulating membrane that  
            surrounds nerve cells in the brain. 

          2.Women have two X chromosomes and are the carriers of the  
            disease, but men are most severely affected because men only  
            have one X chromosome and lack the protection provided by an  
            extra X chromosome. 

          3.X-ALD affects an estimated one in every 20,000 boys, which is  
            roughly 13,600 people in the United States, including boys  
            like Jeremy Hill Jr. of Bakersfield. 

          4.The most common symptoms are behavioral changes, including  
            abnormal withdrawal or aggression, poor memory, and poor  
            school performance. Other symptoms include visual loss,  
            learning disabilities, seizures, poorly articulated speech,  








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            difficulty swallowing, deafness, disturbances of gait and  
            coordination, fatigue, intermittent vomiting, increased skin  
            pigmentation, and progressive dementia. 

          5.Newborn screening is effective in catching and preventing the  
            negative effects of X-ALD and is relatively inexpensive. 

          6.The prognosis for patients with childhood cerebral X-ALD is  
            generally poor due to progressive neurological deterioration,  
            unless bone marrow transplantation is performed early. Death  
            usually occurs between one and 10 years after the onset of  
            symptoms of childhood cerebral X-ALD.

          7.Recent evidence suggests that a mixture of oleic acid and  
            erucic acid, known as "Lorenzo's Oil," administered to boys  
            with X-ALD prior to the onset of symptoms can prevent or  
            delay, but not stop, the appearance of the childhood cerebral  
            form of X-ALD. 

          FISCAL EFFECT:  None


          REGISTERED SUPPORT / OPPOSITION:


          Support


          None on file


          Opposition
          None on file


          Analysis Prepared by:Nicole Willis / RLS. / (916) 319-2800
          













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