The Association for Frontotemporal Degeneration Joins Lawmakers to Advance Dementia Awareness in California
State Senator Roger Niello introduced the resolution, and will present it on the Senate floor and recognize Willis, FTD advocate Terry Walter, and their families. The resolution's coauthors in the Senate are Sens. Jones, Alvarado-Gill, Dahle, Grayson, Ochoa Bogh, Seyarto, Strickland, and Umberg. In the Assembly, its co-authors are Assemblymembers Patterson, Alanis, Chen, Irwin, and Wallis.
This is the second year the AFTD and advocates have gone to California's Capitol to draw attention to the unique impacts of FTD on patients, care partners, families, and public services. In addition to increasing awareness of FTD, they called on Governor Gavin Newsom to add an FTD seat to the California Alzheimer's Disease and Related Disorders Advisory Committee.
'This resolution is a powerful step toward the awareness and policy change needed for this devastating, underdiagnosed disease,' said Meghan Buzby, AFTD's Director of Advocacy and Volunteer Engagement. 'In California, the voices of families and individuals living with FTD are resonating louder than ever — and we will continue pushing for action from the Governor and policymakers to ensure those voices drive meaningful change.'
Emma Heming Willis added, 'FTD robs people of their best years and places enormous strain on care givers and families. I'm so grateful to the California Senate and Assembly for making this issue a priority and standing with us to push for change.'
FTD is the most common early-onset dementia, often diagnosed in people under age 60. Symptoms include personality changes, speech difficulties, and problems with decision-making. There is no cure, but research and clinical trials offer hope.
The full text of the resolution:
Relative to 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 21 to September 28, 2025, inclusive, as Frontotemporal Degeneration Awareness Week in California, in conjunction with the observance of World FTD Awareness Week; and
WHEREAS, The Association for Frontotemporal Degeneration (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 the initial symptoms to get an accurate diagnosis of FTD, with an average life expectancy of 7 to 13 years after the initial symptoms; and
WHEREAS, FTD strikes people as young as 21 years of age and as old as 80 years of age, 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 Alzheimer's disease; and
WHEREAS, 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; and
WHEREAS, The California Master Plan for Aging incorporates all 10 recommendations from the Governor's Task Force on Alzheimer's (Disease) Prevention and Preparedness to help people and families living with Alzheimer's disease 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 Amyotrophic Lateral Sclerosis (ALS), with about one-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 person's ability to express emotions and to show affection and empathy for loved ones; and
WHEREAS, 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; 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, The 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 declares the week of September 21 to September 28, 2025, 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.
For more information, visit theaftd.org.
PJ Lepp AFTD 703-864-9471 [email protected]
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