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Committee approves resolution declaring September Frontotemporal Degeneration Awareness Week
Summary
House Joint Resolution 19, recognizing Frontotemporal Degeneration awareness in September, passed the committee after family members and advocacy groups described diagnosis delays and high caregiver costs.
The Senate State Administration Committee voted to adopt House Joint Resolution 19, which would recognize a Frontotemporal Degeneration (FTD) awareness week in September.
Representative James Reavis, sponsor, told the committee FTD is a neurodegenerative disease that often presents with changes to behavior and personality and is frequently misdiagnosed; he said awareness can speed proper diagnosis and access to care. Family members and advocates delivered emotional testimony about the costs and caregiving burdens associated with FTD. Carrie Jabadlo described her mother’s multi-year path to diagnosis and said late diagnosis cost the family time to document their loved one’s preferences; she provided a monthly-care cost estimate the committee heard: about $12,000 per month and roughly $120,000 annually for advanced FTD care. Lauren Pelea of the Association for Frontotemporal Degeneration noted the average time to diagnosis is about 3.6 years and that FTD affects many people younger than typical dementia ages.
Patrick Yawake and tribal representatives also supported the resolution, saying dementia rates are rising in tribal communities as elders live longer. Committee members expressed sympathy and support. The committee recorded a roll-call vote of 6 in favor and 3 opposed and passed the resolution to the full Legislature.
Votes at a glance: Committee recorded a favorable roll-call vote (6–3) and recommended the resolution.
