This measure would proclaim the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week.

This measure would proclaim the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week.

This measure would proclaim the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week.

WHEREAS, It is the custom of the Legislature to recognize official weeks that are set aside to increase awareness of serious health conditions that affect the lives of citizens of California; and

WHEREAS, Attendant to that concern and in full accord with its longstanding traditions, it is the sense of the Legislature to memorialize and to proclaim the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week in California, in conjunction with the observance of World FTD Awareness Week; and

WHEREAS, the Association for Frontotemporal Degenderation (AFTD) reports that Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern; and

WHEREAS, It takes an average of 3.6 years from start of symptoms to get an accurate diagnosis of FTD with average life expectancy of 7 to 13 years after start of symptoms; and

WHEREAS, FTD strikes people as young as 17 and as old as 87, with the largest percentage of those affected being in their 40s to 60s, rendering people in the prime of life unable to work or function normally; and

WHEREAS, FTD imposes average annual costs associated with care and living with the disease that are approximately double those of Alzheimers disease; and

WHEREAS, FTD is identified in The National Plan to Address Alzheimers Disease as a related dementia and included as a priority in the goals and strategies of the Plan to achieve the vision of a nation free of Alzheimers disease and related dementias; and

WHEREAS, The California Master Plan for Aging incorporates all ten recommendations from the Governors Task Force on Alzheimers Disease Prevention and Preparedness to help people and families living with Alzheimers and related dementia; and

WHEREAS, FTD represents an estimated 5 to 15 percent of all dementia cases and is the most common form of dementia for people under 60 years of age; and

WHEREAS, Approximately 40 percent of people with FTD have a family history of FTD or a related condition such as ALS, with about half of those found to have an inherited form accounted for by mutations in the Progranulin, C9orf72, Tau/MAPT and other rarer genes; and

WHEREAS, FTD is often misdiagnosed as a psychiatric problem or other neurodegenerative disease because of the wide range of cognitive and behavioral symptoms and their young onset; and

WHEREAS, FTD often affects a persons ability to express emotions and to show affection and empathy for loved ones; and

WHEREAS, In the behavioral variant of FTD, a persons sense of social graces and appropriate behavior can be lost, and their personality may be significantly changed; and

WHEREAS, Furthermore, in the language variants of FTD (primary progressive aphasia), a person may have trouble producing speech and understanding grammar, lose the meaning of words or become hesitant in their speech, and may eventually become mute; and

WHEREAS, In the movement variants of FTD, a person may experience muscle weakness, falling, loss of balance, difficulty making speech, difficulty swallowing, or choking; and

WHEREAS, While there has never been a global epidemiology study of FTD, it is estimated that more than 60,000 people are affected in the United States today; and

WHEREAS, AFTD is the leading national organization exclusively focused on the spectrum of FTD disorders with a mission to improve the quality of life of people affected by FTD and drive research to a cure; and

WHEREAS, It is imperative that there be greater awareness of this serious disease, and more must be done to increase activity at the local, state, and national levels; now, therefore, be it

Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature proclaims the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week; and be it further.

Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.

WHEREAS, It is the custom of the Legislature to recognize official weeks that are set aside to increase awareness of serious health conditions that affect the lives of citizens of California; and

WHEREAS, Attendant to that concern and in full accord with its longstanding traditions, it is the sense of the Legislature to memorialize and to proclaim the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week in California, in conjunction with the observance of World FTD Awareness Week; and

WHEREAS, the Association for Frontotemporal Degenderation (AFTD) reports that Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern; and

WHEREAS, It takes an average of 3.6 years from start of symptoms to get an accurate diagnosis of FTD with average life expectancy of 7 to 13 years after start of symptoms; and

WHEREAS, FTD strikes people as young as 17 and as old as 87, with the largest percentage of those affected being in their 40s to 60s, rendering people in the prime of life unable to work or function normally; and

WHEREAS, FTD imposes average annual costs associated with care and living with the disease that are approximately double those of Alzheimers disease; and

WHEREAS, FTD is identified in The National Plan to Address Alzheimers Disease as a related dementia and included as a priority in the goals and strategies of the Plan to achieve the vision of a nation free of Alzheimers disease and related dementias; and

WHEREAS, The California Master Plan for Aging incorporates all ten recommendations from the Governors Task Force on Alzheimers Disease Prevention and Preparedness to help people and families living with Alzheimers and related dementia; and

WHEREAS, FTD represents an estimated 5 to 15 percent of all dementia cases and is the most common form of dementia for people under 60 years of age; and

WHEREAS, Approximately 40 percent of people with FTD have a family history of FTD or a related condition such as ALS, with about half of those found to have an inherited form accounted for by mutations in the Progranulin, C9orf72, Tau/MAPT and other rarer genes; and

WHEREAS, FTD is often misdiagnosed as a psychiatric problem or other neurodegenerative disease because of the wide range of cognitive and behavioral symptoms and their young onset; and

WHEREAS, FTD often affects a persons ability to express emotions and to show affection and empathy for loved ones; and

WHEREAS, In the behavioral variant of FTD, a persons sense of social graces and appropriate behavior can be lost, and their personality may be significantly changed; and

WHEREAS, Furthermore, in the language variants of FTD (primary progressive aphasia), a person may have trouble producing speech and understanding grammar, lose the meaning of words or become hesitant in their speech, and may eventually become mute; and

WHEREAS, In the movement variants of FTD, a person may experience muscle weakness, falling, loss of balance, difficulty making speech, difficulty swallowing, or choking; and

WHEREAS, While there has never been a global epidemiology study of FTD, it is estimated that more than 60,000 people are affected in the United States today; and

WHEREAS, AFTD is the leading national organization exclusively focused on the spectrum of FTD disorders with a mission to improve the quality of life of people affected by FTD and drive research to a cure; and

WHEREAS, It is imperative that there be greater awareness of this serious disease, and more must be done to increase activity at the local, state, and national levels; now, therefore, be it

Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature proclaims the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week; and be it further.

Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.

WHEREAS, It is the custom of the Legislature to recognize official weeks that are set aside to increase awareness of serious health conditions that affect the lives of citizens of California; and

WHEREAS, Attendant to that concern and in full accord with its longstanding traditions, it is the sense of the Legislature to memorialize and to proclaim the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week in California, in conjunction with the observance of World FTD Awareness Week; and

WHEREAS, the Association for Frontotemporal Degenderation (AFTD) reports that Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern; and

WHEREAS, It takes an average of 3.6 years from start of symptoms to get an accurate diagnosis of FTD with average life expectancy of 7 to 13 years after start of symptoms; and

WHEREAS, FTD strikes people as young as 17 and as old as 87, with the largest percentage of those affected being in their 40s to 60s, rendering people in the prime of life unable to work or function normally; and

WHEREAS, FTD imposes average annual costs associated with care and living with the disease that are approximately double those of Alzheimers disease; and

WHEREAS, FTD is identified in The National Plan to Address Alzheimers Disease as a related dementia and included as a priority in the goals and strategies of the Plan to achieve the vision of a nation free of Alzheimers disease and related dementias; and

WHEREAS, The California Master Plan for Aging incorporates all ten recommendations from the Governors Task Force on Alzheimers Disease Prevention and Preparedness to help people and families living with Alzheimers and related dementia; and

WHEREAS, FTD represents an estimated 5 to 15 percent of all dementia cases and is the most common form of dementia for people under 60 years of age; and

WHEREAS, Approximately 40 percent of people with FTD have a family history of FTD or a related condition such as ALS, with about half of those found to have an inherited form accounted for by mutations in the Progranulin, C9orf72, Tau/MAPT and other rarer genes; and

WHEREAS, FTD is often misdiagnosed as a psychiatric problem or other neurodegenerative disease because of the wide range of cognitive and behavioral symptoms and their young onset; and

WHEREAS, FTD often affects a persons ability to express emotions and to show affection and empathy for loved ones; and

WHEREAS, In the behavioral variant of FTD, a persons sense of social graces and appropriate behavior can be lost, and their personality may be significantly changed; and

WHEREAS, Furthermore, in the language variants of FTD (primary progressive aphasia), a person may have trouble producing speech and understanding grammar, lose the meaning of words or become hesitant in their speech, and may eventually become mute; and

WHEREAS, In the movement variants of FTD, a person may experience muscle weakness, falling, loss of balance, difficulty making speech, difficulty swallowing, or choking; and

WHEREAS, While there has never been a global epidemiology study of FTD, it is estimated that more than 60,000 people are affected in the United States today; and

WHEREAS, AFTD is the leading national organization exclusively focused on the spectrum of FTD disorders with a mission to improve the quality of life of people affected by FTD and drive research to a cure; and

WHEREAS, It is imperative that there be greater awareness of this serious disease, and more must be done to increase activity at the local, state, and national levels; now, therefore, be it

Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature proclaims the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week; and be it further.

Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.

SENATE THIRD READING

STR Bill Id:SCR 116

Author:(Jones)

As Introduced Ver:February 21, 2024

Majority vote

SUMMARY

Proclaims the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week.

Major Provisions

1. Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern.
2. It takes an average of 3.6 years from start of symptoms to get an accurate diagnosis of FTD with average life expectancy of seven to 13 years after start of symptoms. FTD strikes people as young as 17 and as old as 87, with the largest percentage of those affected being in their 40s to 60s, rendering people in the prime of life unable to work or function normally.
3. FTD imposes average annual costs associated with care and living with the disease that are approximately double those of Alzheimer's disease.
4. FTD is identified in The National Plan to Address Alzheimer's Disease as a related dementia and included as a priority in the goals and strategies of the Plan to achieve the vision of a nation free of Alzheimer's disease and related dementias.
5. The California Master Plan for Aging incorporates all ten recommendations from the Governor's Task Force on Alzheimer's Disease Prevention and Preparedness to help people and families living with Alzheimer's and related dementia.
6. It is imperative that there be greater awareness of this serious disease, and more must be done to increase activity at the local, state, and national levels.

COMMENTS

According to the Author

Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern. Frontotemporal Degeneration Awareness Week is crucial as it shines a spotlight on this often misunderstood disease, emphasizing detection, diagnosis, and access to care and support services.

Arguments in Support

The Association for Frontotemporal Degeneration (AFTD) writes in support: "The symptoms of FTD vary according to where in the brain the disease starts and where the loss of neurons is most concentrated. While behavior and personality changes are the most common symptoms, loss of language, the ability to communicate, impaired movement and muscle control also occur. This resolution will be instrumental in expanding awareness of FTD in the state of California."

Arguments in Opposition

None on file.

FISCAL COMMENTS

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

VOTES

SENATE FLOOR: 40-0-0

YES: Allen, Alvarado-Gil, Archuleta, Ashby, Atkins, Becker, Blakespear, Bradford, Caballero, Cortese, Dahle, Dodd, Durazo, Eggman, Glazer, Gonzalez, Grove, Hurtado, Jones, Laird, Limón, McGuire, Menjivar, Min, Newman, Nguyen, Niello, Ochoa Bogh, Padilla, Portantino, Roth, Rubio, Seyarto, Skinner, Smallwood-Cuevas, Stern, Umberg, Wahab, Wiener, Wilk

ASM RULES: 9-0-2

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

ABS, ABST OR NV: Low, Waldron

UPDATED

VERSION: February 21, 2024

CONSULTANT: Michael Erke / RLS. / (916) 319-2800 FN: 0003460

Date of Hearing: May 20, 2024

ASSEMBLY COMMITTEE ON RULES

Blanca Pacheco, Chair

SBPCA Bill Id:SCR 116

Author:(Jones) – As Introduced Ver:

SENATE VOTE:

SUBJECT: Frontotemporal Degeneration Awareness Week.

SUMMARY: Proclaims the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week. Specifically, this resolution makes the following legislative findings:

1. Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern.
2. It takes an average of 3.6 years from start of symptoms to get an accurate diagnosis of FTD with average life expectancy of 7 to 13 years after start of symptoms. FTD strikes people as young as 17 and as old as 87, with the largest percentage of those affected being in their 40s to 60s, rendering people in the prime of life unable to work or function normally.
3. FTD imposes average annual costs associated with care and living with the disease that are approximately double those of Alzheimer’s disease.
4. FTD is identified in The National Plan to Address Alzheimer’s Disease as a related dementia and included as a priority in the goals and strategies of the Plan to achieve the vision of a nation free of Alzheimer’s disease and related dementias.
5. The California Master Plan for Aging incorporates all ten recommendations from the Governor’s Task Force on Alzheimer’s Disease Prevention and Preparedness to help people and families living with Alzheimer’s and related dementia.
6. It is imperative that there be greater awareness of this serious disease, and more must be done to increase activity at the local, state, and national levels.

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

REGISTERED SUPPORT / OPPOSITION:

Support

The Association for Frontotemporal Degeneration (AFTD)

Opposition

None on file

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

 THIRD READING 

Bill No: SCR 116

Author: Jones (R)

Introduced: 2/21/24

Vote: 21

SUBJECT: Frontotemporal Degeneration Awareness Week

SOURCE: The Association for Frontotemporal Degeneration

DIGEST:

This resolution proclaims the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week.

ANALYSIS: This resolution makes the following legislative findings:

1. It is the custom of the Legislature to recognize official weeks that are set aside to increase awareness of serious health conditions that affect the lives of citizens of California.
2. Attendant to that concern and in full accord with its longstanding traditions, it is the sense of the Legislature to memorialize and to proclaim the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week in California, in conjunction with the observance of World FTD Awareness Week.
3. The Association for Frontotemporal Degenderation (AFTD) reports that Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern.
4. It takes an average of 3.6 years from start of symptoms to get an accurate diagnosis of FTD with average life expectancy of 7 to 13 years after start of symptoms.
5. FTD is often misdiagnosed as a psychiatric problem or other neurodegenerative disease because of the wide range of cognitive and behavioral symptoms and their young onset.
6. FTD often affects a person’s ability to express emotions and to show affection and empathy for loved ones.
7. In the behavioral variant of FTD, a person’s sense of social graces and appropriate behavior can be lost, and their personality may be significantly changed.
8. Furthermore, in the language variants of FTD (primary progressive aphasia), a person may have trouble producing speech and understanding grammar, lose the meaning of words or become hesitant in their speech, and may eventually become mute.
9. In the movement variants of FTD, a person may experience muscle weakness, falling, loss of balance, difficulty making speech, difficulty swallowing, or choking.

This resolution proclaims the week of September 22 to September 29, 2024, inclusive, as Frontotemporal Degeneration Awareness Week.

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

SUPPORT: (Verified 2/28/24)

The Association for Frontotemporal Degeneration (source)

OPPOSITION: (Verified 2/28/24)

None received

ARGUMENTS IN SUPPORT: According to the author, “Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern. FTD primarily affects individuals in their 40s to 60s but has been diagnosed in individuals as young as 14. FTD accounts for 5 to 15 percent of all dementia cases and affects an estimated 60,000 people in the US. Despite its prevalence, it is often misdiagnosed or overlooked due to its wide range of symptoms and the lack of awareness among the public and healthcare professionals. Frontotemporal Degeneration Awareness Week is crucial as it shines a spotlight on this often misunderstood disease, emphasizing the importance of

early detection, accurate diagnosis, and access to appropriate care and support services.”

Prepared by: Karen Chow / SFA / (916) 651-1520

2/28/24 9:47:44

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