Emma Heming Willis Joins The Association for Frontotemporal Degeneration at California’s Capitol to Mark Watershed Moment in Dementia Awareness

SACRAMENTO, CA. – On Thursday, The Association for Frontotemporal Degeneration (AFTD) and Emma Heming Willis, wife of actor Bruce Willis, joined state lawmakers to mark California’s first resolution in support of Frontotemporal Degeneration Awareness (FTD) Week.

FTD is the most common “young onset” dementia, striking people under age 60. In meetings with state lawmakers and Governor Gavin Newsom, Willis and AFTD highlighted future actions policymakers can take to support FTD diagnosis and treatment, including designating a seat on the CA Alzheimer’s Disease and Related Disorders Advisory Committee for an FTD advocate and adding FTD to the California Neurodegenerative Disease Registry (CNDR).

“We are grateful to Governor Newsom, Assemblymember Maienschein, and Senator Jones for their support of the FTD Awareness Week Resolution, which is key to raising awareness and changing public policy and perceptions around dementia. This is a huge step forward for families dealing with this tragic and underdiagnosed disease,” said AFTD CEO Susan Dickinson.

Emma Heming Willis said, “FTD is a devastating disease that robs people of their best years and has a huge financial and emotional impact on families. I really encourage doctors, policymakers, and the public to learn about FTD and support efforts to find treatment and a cure. I can’t thank the Governor, Senate and Assembly enough for welcoming us to the Capitol today.”

FTD is a group of brain disorders caused by degeneration of the frontal and temporal lobes. In the beginning, people often appear physically healthy despite the neurodegeneration that is occurring. The most common symptoms are uncharacteristic personality changes, apathy, and unexplained struggles with decision-making, movement, speaking, or language comprehension. These symptoms occur infrequently at first but increase over time as the disease progresses.

FTD is the most common dementia for people under age 60, though it may be diagnosed in people from their 20s to their 80s. Unlike Alzheimer’s disease, memory loss is not a hallmark of FTD. There is no treatment for the fatal disease, but research is advancing. Clinical trials underway today provide hope for an approved therapy in the not-too-distant future.

FTD is also often misdiagnosed as a mental illness by medical professionals who are not familiar with the symptoms of the disease; this can sometimes lead to improper treatments and even psychiatric hospitalization. On average, it can take over three and a half years to receive an accurate diagnosis. In the meantime, families often struggle to understand their loved ones’ uncharacteristic and unsettling behavior. Researchers believe the disease is widely underdiagnosed, especially among people of color.