(pictured above, L-R: FTD advocate Wanda Smith, Calif. Assemblymember Brian Maienschein, AFTD CEO Susan L-J Dickinson, FTD advocate Emma Heming Willis, Calif. State Sen. Brian Jones)

AFTD staff traveled to Sacramento to join Emma Heming Willis, Wanda Smith, and other FTD advocates at the State Capitol on May 30 to commemorate the adoption of a resolution proclaiming Sept. 22-29 Frontotemporal Degeneration (FTD) Awareness Week in California.

The resolution was introduced to the Assembly by Brian Maienschein, an Assemblymember representing San Diego, and to the state Senate by Senate Minority Leader Brian Jones.

California’s FTD Awareness Week coincides with World FTD Awareness Week, a globally focused event organized each year by World FTD United, an international coalition of FTD-focused groups that includes AFTD.

While in Sacramento, AFTD staff and Ms. Willis met with Gov. Gavin Newsom and other state lawmakers to highlight other concrete steps California can take to support families living with FTD, including by adding an FTD advocate to the state’s Alzheimer’s Disease and Related Disorders Advisory Committee, and by adding FTD to the California Neurodegenerative Disease Registry (CNDR), which tracks diagnoses of neurodegenerative conditions.

“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,” AFTD CEO Susan L-J Dickinson said. “This is a huge step forward for families dealing with this tragic and underdiagnosed disease.”

On May 15, AFTD staff and Ms. Willis went to Albany, N.Y., to support the introduction of a bill, sponsored by state Sen. Michelle Hinchey, that would create a statewide registry of FTD diagnoses. If the bill becomes law, New York’s FTD registry would be the first of its kind in the country.

Ms. Willis, the wife of Bruce Willis, has been a highly active FTD advocate since she and her family announced the actor’s diagnosis in February 2023. She discussed FTD on NBC’s Today show in September 2023 and was a featured speaker at the 2024 AFTD Education Conference in Houston.

“FTD is a devastating disease that robs people of their best years and has a huge financial and emotional impact on families,” Ms. Willis said. “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.”

Wanda Smith has been a tireless FTD advocate for decades, following her mother’s diagnosis with FTD caused by a mutation to the GRN gene in the 1980s. In May, Alzheimer’s San Diego named her the 2024 Visionary of the Year for her many years of passionate work supporting families with FTD and other dementias.