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Committee considers resolution designating Frontotemporal Degeneration awareness week
Summary
House Joint Resolution 19 would designate a week in September as Frontotemporal Degeneration (FTD) Awareness Week. Family members and national advocates described diagnostic delays, severe care needs and high financial burdens; supporters said the resolution would raise awareness and spur education and policy attention.
Representative James Reavis introduced House Joint Resolution 19, a resolution to declare a week in September as Frontotemporal Degeneration (FTD) Awareness Week. Reavis told the committee that FTD is often misdiagnosed because early symptoms are behavioral and personality changes rather than memory loss and that awareness is the first step toward earlier diagnosis and better care.
Family members and advocates delivered emotional testimony about delayed diagnoses and the financial and care burdens of FTD. Carrie Jablow described her mother's multi‑year misdiagnosis and said that by the time FTD was identified the opportunity to capture the patient's preferences had passed; she said specialized units and 24/7 care can cost tens of thousands of dollars monthly. Lauren Palaiya of the Association for Frontotemporal Degeneration provided national context, citing average time to diagnosis (about 3.6 years), average life expectancy after diagnosis (7–13 years) and estimated economic burdens on families.
Speakers urged the committee that an awareness resolution could catalyze education for clinicians and families, reduce misdiagnosis, and increase support for people living with FTD and their caregivers. The sponsor closed asking for a favorable vote; the committee closed the hearing with no opponents present.
