This measure would proclaim the month of May 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California.

This measure would proclaim the month of May 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California.

This measure would proclaim the month of May 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California.

WHEREAS, Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord; and

WHEREAS, The life expectancy for an individual with ALS is between 2 and 5 years after the date on which the individual receives an ALS diagnosis; and

WHEREAS, ALS occurs throughout the world, with no racial, ethnic, gender, or socioeconomic boundaries; and

WHEREAS, Approximately 2,400 Californians are afflicted with ALS at any time; and

WHEREAS, The cause of ALS is unknown in up to 90 percent of cases; and

WHEREAS, Approximately 10 percent of cases have a strong known genetic driver; and

WHEREAS, On average, the period between the date an individual first experiences symptoms of ALS and the date the individual is diagnosed with ALS is more than 1 year; and

WHEREAS, The onset of ALS often involves muscle weakness or stiffness and the progression of ALS results in the further weakening, wasting, and paralysis of the muscles of the limbs and trunk and the muscles that control vital functions, such as speech, swallowing, and breathing; and

WHEREAS, ALS can strike individuals of any age, but predominantly strikes adults; and

WHEREAS, It is estimated that tens of thousands of individuals in the United States have ALS at any given time; and

WHEREAS, Based on studies of the population, slightly more than 5,600 individuals are diagnosed with ALS each year, and approximately 15 individuals are diagnosed with ALS each day, in the United States; and

WHEREAS, Between 2015 and 2040, the number of ALS cases around the world is expected to increase by nearly 70 percent; and

WHEREAS, The majority of individuals with ALS die of respiratory failure; and

WHEREAS, In the United States, military veterans are significantly more likely to be diagnosed with ALS than the general public; and

WHEREAS, As of the date of introduction of this resolution, there is no cure for ALS; and

WHEREAS, The spouses, children, and family members of individuals living with ALS support these individuals with love, day-to-day care, and more; and

WHEREAS, An individual with ALS or their caregivers can be required to bear significant costs for medical care, equipment, and home care services as the disease progresses; now, therefore, be it resolved

Resolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature of the State of California hereby proclaims May of 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California; and be it further

Resolved, That the Legislature affirms its dedication to (1)ensuring that individuals with ALS have access to effective treatments as soon as possible, (2)identifying the risk factors and causes of ALS to prevent new cases, (3)empowering individuals with ALS to engage with the world in the way they want, (4)reducing the physical, emotional, and financial burdens of living with ALS, and (5)ensuring all individuals with ALS and their caregivers receive high quality services and supports that benefit them; and be it further

Resolved, That the Legislature commends the dedication of the family, caregivers, friends, organizations, volunteers, researchers, providers and caregiving professionals across the nation that are working to improve the quality and length of life for those living with ALS and the development of treatments and cures that reach patients as soon as possible; and be it further

Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.

WHEREAS, Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord; and

WHEREAS, The life expectancy for an individual with ALS is between 2 and 5 years after the date on which the individual receives an ALS diagnosis; and

WHEREAS, ALS occurs throughout the world, with no racial, ethnic, gender, or socioeconomic boundaries; and

WHEREAS, Approximately 2,400 Californians are afflicted with ALS at any time; and

WHEREAS, The cause of ALS is unknown in up to 90 percent of cases; and

WHEREAS, Approximately 10 percent of cases have a strong known genetic driver; and

WHEREAS, On average, the period between the date an individual first experiences symptoms of ALS and the date the individual is diagnosed with ALS is more than 1 year; and

WHEREAS, The onset of ALS often involves muscle weakness or stiffness and the progression of ALS results in the further weakening, wasting, and paralysis of the muscles of the limbs and trunk and the muscles that control vital functions, such as speech, swallowing, and breathing; and

WHEREAS, ALS can strike individuals of any age, but predominantly strikes adults; and

WHEREAS, It is estimated that tens of thousands of individuals in the United States have ALS at any given time; and

WHEREAS, Based on studies of the population, slightly more than 5,600 individuals are diagnosed with ALS each year, and approximately 15 individuals are diagnosed with ALS each day, in the United States; and

WHEREAS, Between 2015 and 2040, the number of ALS cases around the world is expected to increase by nearly 70 percent; and

WHEREAS, The majority of individuals with ALS die of respiratory failure; and

WHEREAS, In the United States, military veterans are significantly more likely to be diagnosed with ALS than the general public; and

WHEREAS, As of the date of introduction of this resolution, there is no cure for ALS; and

WHEREAS, The spouses, children, and family members of individuals living with ALS support these individuals with love, day-to-day care, and more; and

WHEREAS, An individual with ALS or their caregivers can be required to bear significant costs for medical care, equipment, and home care services as the disease progresses; now, therefore, be it resolved

Resolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature of the State of California hereby proclaims May of 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California; and be it further

Resolved, That the Legislature affirms its dedication to (1)ensuring that individuals with ALS have access to effective treatments as soon as possible, (2)identifying the risk factors and causes of ALS to prevent new cases, (3)empowering individuals with ALS to engage with the world in the way they want, (4)reducing the physical, emotional, and financial burdens of living with ALS, and (5)ensuring all individuals with ALS and their caregivers receive high quality services and supports that benefit them; and be it further

Resolved, That the Legislature commends the dedication of the family, caregivers, friends, organizations, volunteers, researchers, providers and caregiving professionals across the nation that are working to improve the quality and length of life for those living with ALS and the development of treatments and cures that reach patients as soon as possible; and be it further

Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.

WHEREAS, Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord; and

WHEREAS, The life expectancy for an individual with ALS is between 2 and 5 years after the date on which the individual receives an ALS diagnosis; and

WHEREAS, ALS occurs throughout the world, with no racial, ethnic, gender, or socioeconomic boundaries; and

WHEREAS, Approximately 2,400 Californians are afflicted with ALS at any time; and

WHEREAS, The cause of ALS is unknown in up to 90 percent of cases; and

WHEREAS, Approximately 10 percent of cases have a strong known genetic driver; and

WHEREAS, On average, the period between the date an individual first experiences symptoms of ALS and the date the individual is diagnosed with ALS is more than 1 year; and

WHEREAS, The onset of ALS often involves muscle weakness or stiffness and the progression of ALS results in the further weakening, wasting, and paralysis of the muscles of the limbs and trunk and the muscles that control vital functions, such as speech, swallowing, and breathing; and

WHEREAS, ALS can strike individuals of any age, but predominantly strikes adults; and

WHEREAS, It is estimated that tens of thousands of individuals in the United States have ALS at any given time; and

WHEREAS, Based on studies of the population, slightly more than 5,600 individuals are diagnosed with ALS each year, and approximately 15 individuals are diagnosed with ALS each day, in the United States; and

WHEREAS, Between 2015 and 2040, the number of ALS cases around the world is expected to increase by nearly 70 percent; and

WHEREAS, The majority of individuals with ALS die of respiratory failure; and

WHEREAS, In the United States, military veterans are significantly more likely to be diagnosed with ALS than the general public; and

WHEREAS, As of the date of introduction of this resolution, there is no cure for ALS; and

WHEREAS, The spouses, children, and family members of individuals living with ALS support these individuals with love, day-to-day care, and more; and

WHEREAS, An individual with ALS or their caregivers can be required to bear significant costs for medical care, equipment, and home care services as the disease progresses; now, therefore, be it resolved

Resolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature of the State of California hereby proclaims May of 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California; and be it further

Resolved, That the Legislature affirms its dedication to (1)ensuring that individuals with ALS have access to effective treatments as soon as possible, (2)identifying the risk factors and causes of ALS to prevent new cases, (3)empowering individuals with ALS to engage with the world in the way they want, (4)reducing the physical, emotional, and financial burdens of living with ALS, and (5)ensuring all individuals with ALS and their caregivers receive high quality services and supports that benefit them; and be it further

Resolved, That the Legislature commends the dedication of the family, caregivers, friends, organizations, volunteers, researchers, providers and caregiving professionals across the nation that are working to improve the quality and length of life for those living with ALS and the development of treatments and cures that reach patients as soon as possible; and be it further

Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.

 THIRD READING 

Bill No: ACR 190

Author: Dixon (R), et al.

Introduced: 5/1/24

Vote: 21

ASSEMBLY FLOOR: Read and adopted, 5/20/24

SUBJECT: Amyotrophic Lateral Sclerosis Awareness Month

SOURCE: The ALS Association

DIGEST:

This resolution proclaims the month of May 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California.

ANALYSIS: This resolution makes the following legislative findings:

1. Amyotrophic Lateral Sclerosis (“ALS”) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS occurs throughout the world, with no racial, ethnic, gender, or socioeconomic boundaries. Approximately 2,400 Californians are afflicted with ALS at any time.
2. The life expectancy for an individual with ALS is between 2 and 5 years after the date on which the individual receives an ALS diagnosis.
3. The cause of ALS is unknown in up to 90 percent of cases. Approximately 10 percent of cases have a strong known genetic driver. On average, the period between the date an individual first experiences symptoms of ALS and the date the individual is diagnosed with ALS is more than 1 year; and
4. The onset of ALS often involves muscle weakness or stiffness and the progression of ALS results in the further weakening, wasting, and paralysis of the muscles of the limbs and trunk and the muscles that control vital functions, such as speech, swallowing, and breathing. Between 2015 and 2040, the number of ALS cases around the world is expected to increase by nearly 70 percent.
5. As of the date of introduction of this resolution, there is no cure for ALS. An individual with ALS or their caregivers can be required to bear significant costs for medical care, equipment, and home care services as the disease progresses.

This resolution proclaims the month of May 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California.

Comments

According to the Author, “I lost my mother to ALS. It is a devastating disease that typically results in death within two to three years after onset. Approximately 5,600 individuals are diagnosed with ALS each day in the United States, and 2,400 Californians are afflicted with ALS at any time. ACR 190 will continue to emphasize the state's commitment to providing access to treatments, identifying risk factors associated with ALS and working to reduce burdens.”

FISCAL EFFECT: Appropriation: No Fiscal Com.: No Local: No

SUPPORT: (Verified 5/24/24)

The ALS Association (source)

California Chronic Care Coalition

OPPOSITION: (Verified 5/24/24)

None received

Prepared by: Aizenia Randhawa / SFA / (916) 651-1520

5/29/24 14:37:21

**** END ****

ASSEMBLY THIRD READING

ATR Bill Id:ACR 190

Author:(Dixon)

As Introduced Ver:May 1, 2024

Majority vote

SUMMARY

Proclaims May of 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California.

Major Provisions

1. Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The life expectancy for an individual with ALS is between two and five years after the date on which the individual receives an ALS diagnosis.
2. ALS occurs throughout the world, with no racial, ethnic, gender, or socioeconomic boundaries. The cause of ALS is unknown in up to 90 percent of cases and approximately 10% of cases have a strong known genetic driver.
3. It is estimated that tens of thousands of individuals in the United States have ALS at any given time. Approximately 2,400 Californians are afflicted with ALS at any time.
4. The onset of ALS often involves muscle weakness or stiffness and the progression of ALS results in the further weakening, wasting, and paralysis of the muscles of the limbs and trunk and the muscles that control vital functions, such as speech, swallowing, and breathing.
5. Based on studies of the population, slightly more than 5,600 individuals are diagnosed with ALS each year, and approximately 15 individuals are diagnosed with ALS each day, in the United States. Between 2015 and 2040, the number of ALS cases around the world is expected to increase by nearly 70%.
6. The Legislature commends the dedication of the family, caregivers, friends, organizations, volunteers, researchers, providers and caregiving professionals across the nation that are working to improve the quality and length of life for those living with ALS and the development of treatments and cures that reach patients as soon as possible.

COMMENTS

According to the Author

I lost my mother to ALS. It is a devastating disease that typically results in death within two to three years after onset. Approximately 5,600 individuals are diagnosed with ALS each day in the United States, and 2,400 Californians are afflicted with ALS at any time. ACR 190 will continue to emphasize the state's commitment to providing access to treatments, identifying risk factors associated with ALS, and working to reduce burdens.

Arguments in Support

The ALS Association and California Chronic Care Coalition write in support: "ACR 190 is significant to those living with ALS since it presents an opportunity to educate policy makers as well as the general public about ALS as a disease, and what resources and supports are needed to treat it and cure it. ALS Awareness Month helps drive engagement to advance our collective commitment to making ALS a livable disease until we can find a cure."

Arguments in Opposition

None on file

FISCAL COMMENTS

No fiscal impact. This resolution is keyed non-fiscal by Legislative Counsel.

VOTES

ASM RULES: 10-0-1

YES: Pacheco, Cervantes, Flora, Friedman, Holden, Jones-Sawyer, Maienschein, Dixon, Ting, Waldron

ABS, ABST OR NV: Low

UPDATED

VERSION: May 1, 2024

CONSULTANT: Michael Erke / RLS. / (916) 319-2800 FN: 0002940

Date of Hearing: May 13, 2024

ASSEMBLY COMMITTEE ON RULES

Blanca Pacheco, Chair

ABPCA Bill Id:ACR 190 (

Author:Dixon) – As Introduced Ver:May 1, 2024

SUBJECT: Amyotrophic Lateral Sclerosis Awareness Month.

SUMMARY: Proclaims May of 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California. Specifically, this resolution makes the following legislative findings:

1. Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The life expectancy for an individual with ALS is between 2 and 5 years after the date on which the individual receives an ALS diagnosis.
2. ALS occurs throughout the world, with no racial, ethnic, gender, or socioeconomic boundaries. The cause of ALS is unknown in up to 90 percent of cases and approximately 10 percent of cases have a strong known genetic driver.
3. It is estimated that tens of thousands of individuals in the United States have ALS at any given time. Approximately 2,400 Californians are afflicted with ALS at any time.
4. The onset of ALS often involves muscle weakness or stiffness and the progression of ALS results in the further weakening, wasting, and paralysis of the muscles of the limbs and trunk and the muscles that control vital functions, such as speech, swallowing, and breathing.
5. Based on studies of the population, slightly more than 5,600 individuals are diagnosed with ALS each year, and approximately 15 individuals are diagnosed with ALS each day, in the United States. Between 2015 and 2040, the number of ALS cases around the world is expected to increase by nearly 70 percent.
6. The Legislature commends the dedication of the family, caregivers, friends, organizations, volunteers, researchers, providers and caregiving professionals across the nation that are working to improve the quality and length of life for those living with ALS and the development of treatments and cures that reach patients as soon as possible.

FISCAL EFFECT: This resolution is keyed non-fiscal by Legislative Counsel.

REGISTERED SUPPORT / OPPOSITION:

Support

ALS Association

California Chronic Care Coalition (CCCC)

Opposition

None on file

Analysis Prepared by: Michael Erke / RLS. / (916) 319-2800

Date of Hearing: May 13, 2024

ASSEMBLY COMMITTEE ON RULES

Blanca Pacheco, Chair

ABPCA Bill Id:ACR 190 (

Author:Dixon) – As Introduced Ver:May 1, 2024

SUBJECT: Amyotrophic Lateral Sclerosis Awareness Month.

SUMMARY: Proclaims May of 2024 as Amyotrophic Lateral Sclerosis Awareness Month in California. Specifically, this resolution makes the following legislative findings:

1. Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The life expectancy for an individual with ALS is between 2 and 5 years after the date on which the individual receives an ALS diagnosis.
2. ALS occurs throughout the world, with no racial, ethnic, gender, or socioeconomic boundaries. The cause of ALS is unknown in up to 90 percent of cases and approximately 10 percent of cases have a strong known genetic driver.
3. It is estimated that tens of thousands of individuals in the United States have ALS at any given time. Approximately 2,400 Californians are afflicted with ALS at any time.
4. The onset of ALS often involves muscle weakness or stiffness and the progression of ALS results in the further weakening, wasting, and paralysis of the muscles of the limbs and trunk and the muscles that control vital functions, such as speech, swallowing, and breathing.
5. Based on studies of the population, slightly more than 5,600 individuals are diagnosed with ALS each year, and approximately 15 individuals are diagnosed with ALS each day, in the United States. Between 2015 and 2040, the number of ALS cases around the world is expected to increase by nearly 70 percent.
6. The Legislature commends the dedication of the family, caregivers, friends, organizations, volunteers, researchers, providers and caregiving professionals across the nation that are working to improve the quality and length of life for those living with ALS and the development of treatments and cures that reach patients as soon as possible.

FISCAL EFFECT: This resolution is keyed non-fiscal by Legislative Counsel.

REGISTERED SUPPORT / OPPOSITION:

Support

ALS Association

Opposition

None on file

Analysis Prepared by: Michael Erke / RLS. / (916) 319-2800