'This is just the beginning': Emma Heming-Willis goes to Instagram to share her thoughts on New York being the first state in the nation to establish a research registry dedicated to Frontotemporal Dementia (FTD). Post from @emmahemingwillis on Instagram

KEY POINTS

  • Bruce Willis' devastating diagnosis changed Hollywood's view on dementia
  • The actor's health battle has brought global attention to the rare condition affecting behaviour, language, and personality

Hollywood icon Bruce Willis, best known for his roles in Die Hard, Pulp Fiction and The Sixth Sense, has been living with frontotemporal dementia (FTD) since his family publicly announced the diagnosis in 2023. Recent reports suggest that the 70-year-old actor now receives full-time care in a specialist nursing facility, as his condition has continued to progress.

FTD is a rare and particularly cruel form of dementia that affects the frontal and temporal lobes of the brain, areas responsible for behaviour, language, and decision-making. Unlike Alzheimer's, which primarily impacts memory, FTD causes marked personality and communication changes — often leading to impulsivity, apathy, or difficulty with speech and understanding. According to the NHS, the illness typically develops between the ages of 45 and 65 and currently has no known cure.

A Historic Step Forward in New York

Now, in a landmark move for dementia research, New York has become the first US state to establish a Frontotemporal Dementia (FTD) Registry, following the signing of bill S598B into law by Governor Kathy Hochul on 20 October 2025.

The new registry will require healthcare providers to report all diagnosed FTD cases to the New York State Department of Health, allowing experts to collect detailed data on how the disease affects different communities. This data will form the foundation of a publicly accessible database, expected to launch in January 2027.

The law's goal is simple but transformative: to create accurate, consistent information on FTD, a disease that is frequently misdiagnosed as Alzheimer's or a psychiatric disorder. Advocates say this new model could guide early detection, improve care standards, and inspire similar efforts in other US states.

'This is progress for a disease that can often feel hopeless,' said State Senator Michelle Hinchey, who sponsored the bill in honour of her late father, Congressman Maurice Hinchey, who also battled FTD.

'New York's law is lighting the way for other states and a national effort that will one day lead to a cure,' she added.

Emma Heming-Willis Responds: 'History Made'

The legislation also marks a personal victory for Bruce Willis' family. His wife, Emma Heming Willis, who has become a vocal advocate for FTD awareness, celebrated the milestone on Instagram.

'History made in New York!' she wrote. 'This law will finally give doctors and researchers the data they need to track FTD diagnoses, raise awareness, and improve care for families living with this disease.'

She went on to thank the bill's sponsors, Senator Michelle Hinchey and Assemblymember Amy Paulin, for 'their leadership, persistence, and courage' and called the law 'community in action.' Heming-Willis added:

'New York will be the model for every state to follow. This is just the beginning.'

Why the Registry Matters

For families like the Willises — and thousands of others living with FTD — the registry represents more than just a policy change. It's a lifeline for research and understanding, offering hope for improved treatment options in the future.

As Bruce Willis' condition continues to highlight the challenges of FTD, New York's pioneering law is a reminder that awareness and advocacy can drive real change. It may be too late to reverse the course of the illness for those already affected, but the new registry ensures that their experiences contribute to a future where diagnosis comes earlier, treatment is better, and support is stronger.