DESIGNATING SEPTEMBER 21-28, 2025, AS “FRONTOTEMPORAL DEGENERATION AWARENESS WEEK” IN THE STATE OF DELAWARE.

Legislation Document

SPONSOR:

Sen. Hoffner

DELAWARE STATE SENATE

153rd GENERAL ASSEMBLY

SENATE RESOLUTION NO. 12

DESIGNATING SEPTEMBER 21-28, 2025, AS “FRONTOTEMPORAL DEGENERATION AWARENESS WEEK” IN THE STATE OF DELAWARE.

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

WHEREAS, it is the sense of the Senate to proclaim the week of September 21- 28, 2025, as Frontotemporal Degeneration Awareness Week in Delaware, 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 start of symptoms to get an accurate diagnosis of FTD with an average life expectancy of 7 to 13 years after the start of symptoms; and

WHEREAS, FTD may strike people between the ages of 21 and 80 with the largest percentage of those affected being between 45 and 64, 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 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, 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, public awareness about FTD is relatively low, leading to delays in diagnosis and mismanagement of the disease. It 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 variants of FTD, a person’s sense of social graces and appropriate behavior can be lost, and their personality may be significantly changed; and

WHEREAS, in the language variants of FTD, 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. This limited scientific understanding of FTD necessitates increased research to uncover the underlying mechanisms, develop effective treatments, and ultimately find a cure; 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 to continue driving 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 153

rd

General Assembly of the State of Delaware, that the week of September 21-28, 2025, is proclaimed as “Frontotemporal Degeneration Awareness Week” in the State of Delaware.

SYNOPSIS

This Resolution designates September 21-28, 2025, as “Frontotemporal Degeneration Awareness Week” in the State of Delaware.

Author: Senator Hoffner