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Standing in our nation’s capital this week felt 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 @emmabrucewillisfund #endFTD #frontotemporaldementia #caregiversupport
In the earlier days, FTD felt like it took away al 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.

@emmabrucewillisfund
The Emma & Bruce Willis Fund was created with a cl The Emma & Bruce Willis Fund was created with a clear vision: a world where frontotemporal dementia is understood, and every caregiver has the support they need to thrive.
This work matters deeply to me. I’ll continue to raise awareness, support research, and stand beside families navigating this journey. 

If you’d like to learn more head to the link in bio. 

🎥: @theaftd Hope Rising event, where I had the opportunity to introduce the fund for the first time.

@emmabrucewillisfund
Just 14 states to go! FTD Awareness Week 2026 is Just 14 states to go! 
FTD Awareness Week 2026 is September 28 - October 4 and we are so close to having it officially recognized in all 50 states through a proclamation or resolution. 
AFTD is leading this effort, which raises FTD’s visibility with policymakers and the public. So, if you live in one of the 14 states that hasn’t officially recognized the week*, we need your help to make it happen for the first time. And, if you’re in one of the 36 states that passed a proclamation or resolution in past years (great work!) we need you to renew it in 2026, because these recognitions don’t always carry over. 
You won’t be doing this alone! The AFTD will guide you every step of the way. You can make a huge difference in educating policymakers and the public about FTD. Email advocacy@theaftd.org to get started. 

*Hawaii, Alaska, Utah, New Mexico, Wyoming, North Dakota, South Dakota, Kansas, Mississippi, Florida, North Carolina, Indiana, Vermont, and Rhode Island

@theaftd @emmabrucewillisfund
I was made to love him. 17 years 💍🤍 📷 @ I was made to love him. 
17 years 💍🤍

📷 @frankiestills

To Care Partners, From

I’m excited to share that The Unexpected Journey, which is dedicated to my fellow care partners is now a New York Times bestseller. The book is published by Maria Shriver’s imprint, The Open Field at Penguin Random House. 

Available now!

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