Frontotemporal Degeneration Awareness Week

SENATE JOINT RESOLUTION 26-004

BY SENATOR(S) Kolker and Simpson, Amabile, Baisley, Bright, Carson, Catlin, Cutter, Danielson, Daugherty, Exum, Frizell, Gonzales J., Hinrichsen, Jodeh, Kipp, Kirkmeyer, Lindstedt, Marchman, Michaelson Jenet, Mullica, Pelton B., Pelton R., Rich, Roberts, Rodriguez, Snyder, Sullivan, Wallace, Weissman, Zamora Wilson, Coleman; also REPRESENTATIVE(S) Clifford, Bacon, Boesenecker, Bottoms, Bradfield, Brown, Caldwell, Camacho, Duran, English, Espenoza, Flanell, Froelich, Garcia, Garcia Sander, Gilchrist, Goldstein, Gonzalez R., Hamrick, Hartsook, Jackson, Johnson, Keltie, Lieder, Lindsay, Lukens, Marshall, Mauro, McCormick, Nguyen, Paschal, Phillips, Ricks, Rutinel, Rydin, Slaugh, Smith, Stewart K., Stewart R., Story, Suckla, Taggart, Titone, Velasco, Willford, Woodrow, W oog, Zokaie, McCluskie.

CONCERNING RECOGNIZING THE WEEK OF SEPTEMBER 20 THROUGH SEPTEMBER 26, 2026, AS "FRONTOTEMPORAL DEGENERATION AWARENESS WEEK".

WHEREAS, The Association for Frontotemporal Degeneration reports that Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes of the brain; and WHEREAS, It is the custom of the General Assembly to recognize official time periods to increase awareness of serious health conditions that affect the lives of Colorado citizens; and WHEREAS, In conjunction with the observance of World FTD Awareness Week, Colorado will join many others in recognizing September 20 through September 26, 2026, as "Frontotemporal Degeneration Awareness Week"; and WHEREAS, FTD causes impairments to speech, personality,

behavior, and motor skills--which constitute 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 a remaining life expectancy of 7 to 13 years, on average, after the start of symptoms; and WHEREAS, FTD strikes people between the ages of21 and 80, with the largest percentage of those affected being between 45 and 64, rendering people in their prime of life unable to work or function normally; and WHEREAS, FTD imposes additional average annual costs of care, impacting those living with the disease; this financial cost is at least 120 percent the economic burden of Alzheimer's disease; and WHEREAS, FTD is named 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 without Alzheimer's disease and all other forms of dementia; and WHEREAS, While FTD is recognized as a related dementia within the "Talk About Dementia" awareness campaign spearheaded by the Colorado Department of Public Health and Environment, this resolution serves to establish "FTD Awareness Week" by supporting the goals laid out in similar Statewide initiatives to comprehensively address and acknowledge all forms of dementia; and WHEREAS, With FTD comprising an estimated 5 to 15 percent of all forms of dementia cases, in aggregate, FTD is the most common form of dementia for people under 60 years old; and WHEREAS, Approximately 40 percent of people with FTD have a family history of FTD or a closely related condition such as ALS (Amyotrophic. Lateral Sclerosis), and roughly half of those people are found to have an inherited form manifested in gene mutations in the Progranulin, C9orf72, Tau/MAPT, and other rarer genes; and WHEREAS, FTD is often misdiagnosed as either a psychiatric disorder or a catch-all neurodegenerative disease due to the vast range

and diverse combinations of cognitive and behavioral symptoms, and most cases ofFTD are diagnosed in people aged 45 to 65--an age group much younger than all other common forms of dementia that typically affect those over 65; and WHEREAS,- FTD often negatively changes a person's ability to express emotions and show affection and empathy for loved ones; and WHEREAS, In the behavioral variant of FTD, a person's sense of social etiquette and appropriate behavior can be completely lost; it can also result in a distortion of personality so profound that loved ones may feel they are living with a complete stranger; and WHEREAS, In the language variants ofFTD, in addition to Primary Progressive Aphasia (PP A), variants include Semantic Variant PP A (svPPA, also called Semantic Dementia), N onfluent/Agrammatic Variant PPA (nfvPPA), Logopenic Variant PPA (lvPPA), Behavioral Variant FTD (bvFTD), and FTD with Motor Neuron Disease (FTD-ALS/MND)--noting the 3 PPA subtypes are distinct, but all are considered part of the "language-led" (aphasic) spectrum ofFTD; and WHEREAS, Additionally in the language variants ofFTD, a person may experience difficulty speaking and understanding grammar, forget the meaning of words, and demonstrate a drastically diminished vocabulary--becoming increasingly hesitant to speak and potentially losing the ability to speak altogether; 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, A formal global epidemiology study ofFTD is yet to take place. However, the current estimation is believed to be over 60,000 people affected in the United States, which is likely a paltry fraction of the total figure, if accounting for the gap of cases that comprise the initial 4 years of misdiagnosis and underdiagnosis in aggregate; and WHEREAS, The Association for Frontotemporal Degeneration is the leading national organization exclusively focused on the spectrum ofFTD disorders with a mission to improve the quality of life of people affected

by FTD and drive research to a cure; and WHEREAS, Raising greater awareness of this serious disease is imperative, and further action is needed to increase engagement and advocacy at the local, state, and national levels; now, therefore, Be It Resolved by the Senate of the Seventy-fifth General Assembly of the State of Colorado, the House ofRepresentatives concurring herein:

That we, the members of the Colorado General Assembly, proclaim the week of September 20 through September 26, 2026, as "Frontotemporal Degeneration Awareness Week" in Colorado.

Be It Further Resolved, That a copy of this Joint Resolution be sent to the Association for Frontotemporal Degeneration.

James Rashad Coleman Sr. PRESIDENT OF THE SENATE

Julie McCluskie SPEAKER OF THE HOUSE OF REPRESENTATIVES

Esther van Mourik SECRETARY OF THE SENATE

Vanessa Reilly CHIEF CLERK OF THE HOUSE OF REPRESENTATIVES