Roseville event shines light on devastating disease

A special event was recently held to bring awareness about the devastating and incurable disease known as frontotemporal degeneration. State Senator Roger Niello (R-Fair Oaks) was on hand for the event to support participants and talk about his legislation, which could play a key role in further expanding awareness of this growing health issue. The event was "Walk for Hope 5K," which was held in last weekend's rainstorm in Roseville's Maidu Park. And while the weather was far from ideal, that didn't stop large crowds of people from taking part in the walk to fundraise for The Association for Frontotemporal Degeneration, meet others who have been affected by the disease and raise community awareness. Frontotemporal degeneration (FTD) is a neurodegenerative disease caused by the shrinking of the brain's frontal and temporal lobes. The disease typically affects people between the ages of 40-60 and leads to changes in language, behavior and personality as it progresses. Actor Bruce Willis was diagnosed with the disease in 2022, bringing more attention to the condition. While FTD is incurable, it can be managed to a degree through treatments; it is the most common form of dementia for people under the age of 60. Sen. Niello gave opening remarks at the event, expressed gratitude to organizers and presented certificates of recognition to the volunteers. Niello also discussed Senate Bill 1047, which he co-authored with Sen. Bill Allen (D-Santa Monica). The legislation would expand the California Neurodegenerative Disease Registry to include data collection on FTD diagnoses in the state. If passed into law, SB 1047 would require healthcare providers across California to report FTD diagnoses to the California Department of Public Health — which already tracks Alzheimer's disease, Parkinson's disease, multiple sclerosis and amyotrophic lateral sclerosis — strengthening the state's ability to track the disease's impact, improve care pathways and accelerate research. Niello told the Roseville Press-Tribune this legislation aims to give victims of FTD and their families a voice. "Too many California families feel like they're fighting frontotemporal degeneration (FTD) in the dark, and the great turnout at Walk for Hope 5K goes to show the resilience of people with FTD and their support system," said Niello. "I am proud to be working on legislation to expand the California Neurodegenerative Disease Registry to begin collecting data on FTD across the state, and I am grateful to the fierce leaders like Lisa Ferro and Terry Walter for making this amazing event possible." Walter lost her husband, Steven, to FTD and ALS many years ago. Several members of Steven's family also died from the disease. Walter threw herself into advocating for others who are victims of the disease by raising awareness in a variety of ways, including being involved with this annual walk in Roseville. Walter also dedicates time raising funds for the Association for Frontotemporal Degeneration. "Today, we work so hard so no other family members or other families will have to go through this horrific journey," said Walter. As FTD progresses, the person will experience personality changes, behave inappropriately in social or work settings or struggle to communicate with others. Over time, physical complications arise such as pneumonia or injury from a fall. The average life expectancy is 7 to 13 years after diagnosis. Most recently, the California Senate Health Committee unanimously passed Niello's legislation; it now continues to move forward in the legislative process. "California is leading by example. This kind of strong, forward-thinking legislation can pave the way for national change," said Meghan Buzby, director of advocacy and volunteer engagement at the Association for Frontotemporal Degeneration. "Every advancement for this bill lights the way for other states to follow suit."