(The Center Square) – Emma Heming Willis, wife of movie star Bruce Willis, joined lawmakers in the California Capitol on Monday to push for passage of a bill that would track cases of frontotemporal degeneration, the type of dementia her husband has.
The bill Emma Heming Willis advocated for, Senate Bill 1047, authored by Sen. Roger Niello, R-Fair Oaks, would require the California Department of Public Health to collect data on FTD.
The department already collects data on Huntington’s Disease, Parkinson’s Disease, Alzheimer’s and multiple sclerosis, among other illnesses.
SB 1047 was placed in the Assembly’s suspense file on July 1, right before the Legislature adjourned for their one-month summer break. The Legislature reconvened on Monday and has one more month to pass bills before it adjourns for the rest of the year. At that point, any unpassed bills in the Assembly effectively die without a vote on that chamber’s floor.
“If we add FTD to the neurodegenerative disease registry, we don’t just count California patients,” Emma Heming Willis said at a press conference held in the Capitol on Monday. “We build a dataset that biotech researchers here in California need to find treatments and a cure.”
The bill would require data about FTD to be collected in the state’s Neurodegenerative Disease Registry Program and prolongs operation of the program to Jan. 1, 2032. The program was previously meant to sunset on Jan. 1, 2028. According to a legislative analysis of the bill, paying for the program would cost $2.7 million a year in general fund revenues. That would include paying for staff and information technology.
FTD, also referred to as Pick’s Disease, is a group of brain disorders caused by degeneration or nerve cell loss in parts of the brain behind the forehead or around the ears, according to the Association for Frontotemporal Degeneration. Patients with this disease experience loss of function in those parts of the brain, which can result in personality changes, apathy, unexplained struggles to make decisions, movement, speaking and understanding words.
Family members of people who show those symptoms often can’t get answers from doctors when they question what illness is causing their loved ones to experience these symptoms, Meghan Buzby, director of advocacy and volunteer engagement for the Association for Frontotemporal Degeneration, said on Monday.
“Unfortunately, for many California families, those are not hypothetical questions,” Buzby said at the press conference. “They’re the reality of a long, frustrating road toward a diagnosis of FTD.”
Research published by Therapeutic Advances in Psychopharmacology show that therapies to treat FTD are limited, but recent advances are preliminary and there still remains no cure for the disease.
Willis, who said her husband was first diagnosed with FTD in 2022, acknowledged there is no treatment that will slow down or stop her husband’s illness. However, tracking cases of FTD can help in research for a cure and could even help those diagnosed with related illnesses, she said.
“Research focused on genetic FTD offers great hopes for finding treatments,” Willis said. “What we learn from one can be the key to treating another, like ALS or Alzheimer’s. But this can only happen when people with FTD are diagnosed and counted, and we know the true scale of how many people are affected.” (ALS is also known as Lou Gehrig’s Disease.)
Willis also answered a question from The Center Square inquiring about condition of her husband, who starred in movies such as the “Die Hard” films and “The Fifth Element.”
“I think he’s doing as well as he can with a very unkind disease,” Willis said.
