Emma Heming Willis

My new op-ed is out today in The San Bernardino Sun, Riverside Press-Enterprise, and other papers about Senate Bill 1047.
FTD families deserve to be seen, counted, and supported. I wrote this op-ed because awareness alone is not enough. We need systems that recognize the reality families are living every day and help move research, resources, and support forward.
This bipartisan bill, authored by and , would create a registry to track FTD diagnoses in California, just as MS, ALS, Parkinson’s, and Alzheimer’s are already tracked.
This matters because data creates visibility. Visibility drives research, resources, support, and ultimately progress toward treatments and a cure.
If you live in California, please consider contacting your legislator and urging support for SB 1047. The bill is currently on the Senate Appropriations Committee suspense file, and we’ll learn this week whether it moves forward.
Please take a moment to read and share. Visibility matters. 💙 link in bio
You can find your California representatives in my bio too.

My mom raised me as a single parent, and when I look back I realize how much of who I am came from watching her.
She taught me resilience without ever calling it that. She taught me independence, hard work, compassion, and how to keep showing up even when life feels hard and heavy. She carried so much on her shoulders, yet somehow still made me feel deeply loved, supported, and safe.
As a mother now myself, I understand her in a completely different way. So much of how I move through motherhood today comes from her.
And the greatest gift of my life is getting to be a mom to Mabel and Evelyn. There is nothing more meaningful to me than raising them and watching them grow into who they are becoming.
Happy Mother’s Day to all the mothers, single mothers, grandmothers, stepmothers, and mother figures who shape us in ways we might not fully understand until later. 💞

Meet the Village 💙
There’s a part of dementia no one prepares you for. Not just the diagnosis, but the silence shaped by stigma.
Betsy’s story puts words to that experience—why people pull away, why caregivers feel so alone, and what we can do to change it.
Head to the blog on emmahemingwillis.com to read Betsy’s poignant reflection—link in bio

Standing in our nation’s capital this week felt exciting and deeply personal.
Since becoming an FTD and caregiver advocate, I’ve always dreamed of bringing this work to Washington, to help ensure that families like yours and mine are seen, heard, and supported at the highest level.
I was honored to join the Association for Frontotemporal Degeneration for their first-ever Capitol Hill briefing, bringing together caregivers, researchers, lawmakers, and those living with FTD to shine a light on a disease that is still too often misunderstood, misdiagnosed, and overlooked.
FTD is non-partisan. It doesn’t care if you’re a Republican or a Democrat. It walks into homes across America every day, without warning or mercy. The systems families are told to rely on just aren’t built for this disease.
I’m grateful to the members of Congress who are showing up, listening, and working toward real change. We must continue to push for greater awareness, stronger caregiver support, and sustained federal investment in research, because what I witnessed in DC is that progress is possible, and families cannot do this alone.

theaftd The Emma & Bruce Willis Fund

In the earlier days, FTD felt like it took away all sense of hope and agency. But over time, I realized I still had choices.
Moving from isolation to connection, and then into advocacy, gave me a way to stand up to it.
If you’re walking this path, I want to share something I wasn’t told, but feel is important to say. That not everything is lost, and that there is a way through this, in your own way, in your own time.
💙 Read on the blog at EmmaHemingWillis.com — link in bio.

The Emma & Bruce Willis Fund