CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION Assembly Concurrent Resolution No. 138Introduced by Assembly Member SantiagoSeptember 13, 2017 Relative to Leukodystrophy Awareness Month. LEGISLATIVE COUNSEL'S DIGESTACR 138, as introduced, Santiago. Leukodystrophy Awareness Month.This measure would proclaim the month of September 2017 as Leukodystrophy Awareness Month, in honor of Clara Maureen McLean, Lindy Suhr, and all other Californians living with, or deceased from, the various forms of leukodystrophy.Digest Key Fiscal Committee: NO Bill TextWHEREAS, September is National Leukodystrophy Awareness Month; andWHEREAS, Leukodystrophy diseases are a group of rare, often genetic, white matter diseases of the brain that occur once in every 7,700 births overall, with some types of leukodystrophy occurring as rarely as once in every 100,000 to 160,000 births; andWHEREAS, Many leukodystrophy diseases cause infants and children who have often developed typically to be robbed of their ability to walk, stand, breathe, and swallow on their own, causing many to become severely debilitated and not survive childhood; andWHEREAS, More than 60 types of leukodystrophy have been identified and it is estimated that 50 percent of individuals with leukodystrophy have a currently unspecified form due to the heterogeneity and complexity of these disorders, coupled with the national need for research, scientific understanding, and advancement toward a cure; andWHEREAS, New types of leukodystrophy are being discovered each year as the frontiers of clinical research, advanced imaging, and genetic science are expanded; andWHEREAS, Leukodystrophy diseases are some of the approximately 7,000 rare diseases that cumulatively affect 1 in 10 Americans, over one-half of whom are children, of which 30 percent will not live to see their fifth birthday; andWHEREAS, In California, nearly 100 infants with leukodystrophy are born each year to families who will not know their babies have the disease until irreversible symptoms occur; now, therefore, be itResolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature takes pleasure in joining local and national organizations focused on raising awareness of leukodystrophy and enabling scientific research, providing access to appropriate improved clinical care, and assisting families affected by leukodystrophy diseases, by proclaiming the month of September 2017 as Leukodystrophy Awareness Month; and be it furtherResolved, That this proclamation is made in honor of Clara Maureen McLean, a now two-year-old Californian recently diagnosed with an unspecified and therefore, at this time, untreatable leukodsytrophy, and in honor of Lindy Suhr, born in California 37 years ago this month with Metachromatic Leukodystrophy and who progressed for six years before an accurate diagnosis was achieved, and on behalf of all other Californians living with, or deceased from, the various forms of leukodystrophy; and be it furtherResolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the Governor and to the author for appropriate distribution.
CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION Assembly Concurrent Resolution No. 138Introduced by Assembly Member SantiagoSeptember 13, 2017 Relative to Leukodystrophy Awareness Month. LEGISLATIVE COUNSEL'S DIGESTACR 138, as introduced, Santiago. Leukodystrophy Awareness Month.This measure would proclaim the month of September 2017 as Leukodystrophy Awareness Month, in honor of Clara Maureen McLean, Lindy Suhr, and all other Californians living with, or deceased from, the various forms of leukodystrophy.Digest Key Fiscal Committee: NO
CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION
Assembly Concurrent Resolution No. 138
Introduced by Assembly Member SantiagoSeptember 13, 2017
Introduced by Assembly Member Santiago
September 13, 2017
Relative to Leukodystrophy Awareness Month.
LEGISLATIVE COUNSEL'S DIGEST
## LEGISLATIVE COUNSEL'S DIGEST
ACR 138, as introduced, Santiago. Leukodystrophy Awareness Month.
This measure would proclaim the month of September 2017 as Leukodystrophy Awareness Month, in honor of Clara Maureen McLean, Lindy Suhr, and all other Californians living with, or deceased from, the various forms of leukodystrophy.
This measure would proclaim the month of September 2017 as Leukodystrophy Awareness Month, in honor of Clara Maureen McLean, Lindy Suhr, and all other Californians living with, or deceased from, the various forms of leukodystrophy.
## Digest Key
## Bill Text
WHEREAS, September is National Leukodystrophy Awareness Month; and
WHEREAS, Leukodystrophy diseases are a group of rare, often genetic, white matter diseases of the brain that occur once in every 7,700 births overall, with some types of leukodystrophy occurring as rarely as once in every 100,000 to 160,000 births; and
WHEREAS, Many leukodystrophy diseases cause infants and children who have often developed typically to be robbed of their ability to walk, stand, breathe, and swallow on their own, causing many to become severely debilitated and not survive childhood; and
WHEREAS, More than 60 types of leukodystrophy have been identified and it is estimated that 50 percent of individuals with leukodystrophy have a currently unspecified form due to the heterogeneity and complexity of these disorders, coupled with the national need for research, scientific understanding, and advancement toward a cure; and
WHEREAS, New types of leukodystrophy are being discovered each year as the frontiers of clinical research, advanced imaging, and genetic science are expanded; and
WHEREAS, Leukodystrophy diseases are some of the approximately 7,000 rare diseases that cumulatively affect 1 in 10 Americans, over one-half of whom are children, of which 30 percent will not live to see their fifth birthday; and
WHEREAS, In California, nearly 100 infants with leukodystrophy are born each year to families who will not know their babies have the disease until irreversible symptoms occur; now, therefore, be it
Resolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature takes pleasure in joining local and national organizations focused on raising awareness of leukodystrophy and enabling scientific research, providing access to appropriate improved clinical care, and assisting families affected by leukodystrophy diseases, by proclaiming the month of September 2017 as Leukodystrophy Awareness Month; and be it further
Resolved, That this proclamation is made in honor of Clara Maureen McLean, a now two-year-old Californian recently diagnosed with an unspecified and therefore, at this time, untreatable leukodsytrophy, and in honor of Lindy Suhr, born in California 37 years ago this month with Metachromatic Leukodystrophy and who progressed for six years before an accurate diagnosis was achieved, and on behalf of all other Californians living with, or deceased from, the various forms of leukodystrophy; and be it further
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the Governor and to the author for appropriate distribution.