From left are Lisa Ferro, Senator Niello and Doug Ferro at the FTD Walk for Hope event. Courtesy photo

Many people know actor Bruce Willis from the movies on big screens, but behind the screens in his personal life, he has lived with frontotemporal degeneration, commonly referred to as FTD, since 2022. Bruce Willis’ wife, Emma Heming Willis, shares the early stages of the diagnosis on her website where she describes, “I struggled with a sense of powerlessness, feeling as if I had no control over what was happening to my family.” Emma Heming Willis acknowledged, “This journey – our unexpected journey – doesn’t have to feel unrelenting or hopeless. In fact, you may discover, just as I have, that even in the hardest moments, there are unexpected treasures to be found along the way.”

FTD doesn’t announce itself with forgotten names or misplaced keys. It barges in by rewriting who a person is. For many, FTD is a slowly progressing disease that leads to gradual changes in behavior and speech. It targets the brain’s frontal and temporal regions (the centers of judgment, empathy, communication) and as those nerve cells deteriorate, the changes can be as bewildering as they are devastating. Unlike Alzheimer’s disease, FTD often strikes people in their 40s to 60s, leading to profound changes in relationships, work and independence. There is currently no treatment or cure, and increased awareness and research funding are crucial.

At Maidu Regional Park in Roseville on a rainy and cold Saturday this month, 240 people showed up with great spirit and high energy to participate in the very first FTD Walk for Hope. This independently organized event was spearheaded by Lisa Ferro and Terry Walter, whose FTD stories were shared with the walkers and supporters in attendance. I was grateful to be part of this emotional, poignant, and inspirational event and to recognize the people who made it a success. This walk raised over $37,000 and after expenses, will be donating roughly $31,500 in support of the Association for Frontotemporal Degeneration.

From left are AFTD ambassador Terry Walter who spearheaded the event, Senator Niello and event organizer Lisa Ferro. Courtesy photo

In the legislature, I am working on legislation to expand the California Neurodegenerative Disease Registry to include data collection on frontotemporal degeneration diagnoses in the state. If passed into law, Senate Bill 1047 would require healthcare providers to report FTD diagnoses to the California Department of Public Health to strengthen the state’s ability to track the disease’s impact, improve care pathways, and accelerate research.

The effort to raise awareness never stops! The next event by Terry Walter, Association for Frontotemporal Degeneration Ambassador, is “Food for Thought,” which will be held from 5:30 to 7:30 p.m. on Friday, Sept. 18 at the Woman's Club of Lincoln.

Senator Niello thanks the event organizers and participants. Courtesy photo