Advocates call on NYS to pass registry tracking frontotemporal dementia

ALBANY, N.Y. ( NEWS10 ) — Advocates are calling on New York State lawmakers to pass a new bill they said would drastically help those diagnosed with frontotemporal dementia . The bill would establish the country’s first statewide FTD research registry.

The disease gained widespread attention in 2023 after it was revealed actor Bruce Willis had been diagnosed with the condition. The actor’s wife joined the call at the New York State Capitol on Wednesday.

“The registry will track FTD diagnosis giving lawmakers and policymakers real insight into FTD prevalence,” Emma Heming Willis said. “This data will make it possible for treatment to go to clinical trials with the goal of finding a cure.”

According to the National Institute of Health, FTD represents around 20 percent of all dementia cases in the United States.

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