Senate Bill 1047<\/a>) in the California Senate that would require the California Neurodegenerative Disease Registry to begin collecting data on frontotemporal degeneration (FTD) diagnoses across the state.<\/p>\nFTD represents a group of progressive brain disorders that affect critical 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\u2019s impact, allocate resources, and improve pathways to care.<\/p>\n
\u201cToo many California families feel like they\u2019re fighting this disease in the dark,\u201d said Niello, lead author of the bill. \u201cExpanding this registry is a chance to bring light into that darkness. It will help us gather the data we desperately need while giving a voice and hope to those enduring one of the most devastating diagnoses a family can face.\u201d<\/p>\n
The proposed measure would direct hospitals and healthcare providers throughout the state to report new FTD diagnoses to the California Department of Public Health, which would then integrate the information into the California Neurodegenerative Disease Registry. The registry makes its data available at the request of qualified researchers and public health professionals while protecting its confidential nature.<\/p>\n
\u201cUnderstanding who is being diagnosed, where, and under what circumstances changes everything about how a state can respond to FTD,\u201d said Meghan Buzby, the Association for Frontotemporal Degeneration\u2019s (AFTD\u2019s) director of advocacy and volunteer engagement. \u201cGood policy starts with good data, and we\u2019re grateful to Sens. Niello and Allen for their leadership in helping ensure the FTD community is seen and counted.\u201d<\/p>\n
Unlike Alzheimer\u2019s disease, FTD can more often strike individuals in midlife, interrupting lives\u2014emotionally, physically, and financially\u2014in their prime. Despite the disease\u2019s devastation, the lack of systematic data collection has limited public awareness and delayed improvements in clinical care.<\/p>\n
\u201cAs an FTD caregiver, I\u2019ve experienced the heartbreak of searching for answers in a healthcare system that too often doesn\u2019t see this disease,\u201d said AFTD advocate Emma Heming Willis, wife of actor Bruce Willis, who was diagnosed with FTD in 2023. \u201cBy tracking FTD diagnoses, California will reveal the true scope of this illness, and the families living with it every day. This bill is about dignity and understanding, but it\u2019s also about building real, lasting support through public health policy so no family facing FTD is overlooked.\u201d<\/p>\n
SB 1047 is preceded by recent successful efforts in New York to drive FTD reporting infrastructure through legislation; last year, a bill championed by Sen. Michelle Hinchey (D\u2013Kingston) and Assemblymember Amy Paulin (D\u2013Scarsdale) created the nation\u2019s first-ever state-level FTD registry.<\/p>\n
California\u2019s proposed approach has practical similarities to New York\u2019s registry, but benefits from the state\u2019s existing, unique neurodegenerative data collection framework. At present, California\u2019s Neurodegenerative Registry already collects diagnosis data on Alzheimer\u2019s disease, Parkinson\u2019s disease, multiple sclerosis, amyotrophic lateral sclerosis, and Huntington\u2019s disease.<\/p>\n
\u201cThe introduction of this bill marks a meaningful turning point for the FTD community in California,\u201d said Susan Dickinson, AFTD\u2019s Chief Executive Officer. \u201cFor too long, families affected by frontotemporal degeneration have waited to be fully recognized, and this legislation affirms that their experiences matter. California has the opportunity to ensure that every diagnosis strengthens our shared commitment to supporting individuals and families today, while advancing the long-term work of ending FTD.\u201d<\/p>\n
How State FTD Registries Differ from the FTD Disorders Registry<\/p>\n
Despite sharing the word \u201cregistry,\u201d the proposed California FTD registry differs significantly from the existing FTD Disorders Registry. The former would require clinicians to report all new FTD diagnoses\u2014an important first step to establishing FTD\u2019s impact on the state. The FTD Disorders Registry, meanwhile, is global in scope, and relies on voluntary participation from persons diagnosed and their loved ones, thus ensuring their lived experiences are incorporated into FTD research.<\/p>\n
About AFTD: Online at theaftd.org,<\/a> AFTD is the largest national nonprofit devoted to providing resources to help families affected by FTD today, and advancing research to foster accurate diagnoses, treatments, and a cure. Our volunteer-founded organization \u2013 driven by thousands of volunteers and donors \u2013 reflects a community\u2019s profound determination to #endFTD.<\/p>\nSOURCE: The Association for Frontotemporal Degeneration<\/p>\n
CONTACT: Meghan Buzby Association for Frontotemporal Degeneration 866-507-7222 mbuzby@theaftd.org<\/p>\n","protected":false},"excerpt":{"rendered":"SB 1047 Would Require Statewide Reporting of FTD Diagnoses to Strengthen Research, Resources, and Support for Families King…\n","protected":false},"author":2,"featured_media":176632,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[84105,25907,70307,7,9,8,1620,84103,84104,36955],"class_list":{"0":"post-176631","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-california","8":"tag-aftd","9":"tag-alzheimers-disease","10":"tag-ben-allen","11":"tag-california","12":"tag-california-headlines","13":"tag-california-news","14":"tag-california-senate","15":"tag-frontotemporal-degeneration","16":"tag-neurodegenerative-disease","17":"tag-roger-niello"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/posts\/176631","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/comments?post=176631"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/posts\/176631\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/media\/176632"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/media?parent=176631"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/categories?post=176631"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-ca\/wp-json\/wp\/v2\/tags?post=176631"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}