1 minute
Senate Bill 1047 is a bipartisan bill that would require the California Neurodegenerative Disease Registry to begin collecting data on frontotemporal degeneration (FTD) diagnoses across the state. FTD is the most common dementia for people under age 60 and represents a group of progressive brain disorders that affect areas of the brain responsible for personality, behavior, language, and motor skills.
FTD is often misdiagnosed or undetected due to its symptoms overlapping with those of other neurodegenerative diseases, as well as a historic lack of systematic data tracking. Current gaps in state-level reporting hinder efforts by researchers, clinicians, and policymakers to understand the disease’s impact, allocate resources, and improve pathways to care.
Joint authors and co-author of the legislative proposal will be joined by advocates who will share their personal experience with FTD and caregiving for family members with FTD. Speakers will be available for 1:1 interviews following the press conference.
WHO:
Senator Roger Niello (R-Fair Oaks), Joint Author
Senator Ben Allen (D-Santa Monica), Joint Author
Assemblymember Jacqui Irwin (D-Thousand Oaks), Co-author
Meghan Buzby, Director of Advocacy and Volunteer Engagement, Association for Frontotemporal Degeneration (AFTD)
Emma Heming Willis, Author and FTD Advocate
Kelly McKenna, CEO, End Chronic Disease
FTD patients, families, and advocates
WHAT:
Senate Bill 1047 Press Conference
WHEN:
Monday, August 3 at 12:00 PM
WHERE:
State Capitol, Room 112
1315 10th Street
Sacramento, CA 95814