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Right now, when someone is diagnosed with FTD in C Right now, when someone is diagnosed with FTD in California, that diagnosis isn’t captured in the state’s Neurodegenerative Disease Registry. It essentially disappears. To learn that my husband Bruce’s diagnosis vanished and wasn’t being counted did not sit well with me.
My goal as an advocate always remains the same: To find treatments and a cure for FTD. But we can’t get there if we don’t count the people living with this disease. Data matters. It’s the cornerstone of research, clinical trials, and ultimately finding treatments. 
California Senate Bill 1047 would fix this gap by adding FTD to California’s existing Neurodegenerative Disease Registry. If it becomes law, every FTD diagnosis in California will become part of our public health record.
This week @theAFTD, fellow FTD advocates, and I met with legislators and staff at the State Capitol about SB 1047 to make sure our community is seen and counted. We also took part in the Senate’s resolution ceremony recognizing FTD Awareness Week, coming up Sept. 28 – Oct. 4. 
I’m so grateful to the bill’s co-authors @senrogerniello and @senbenallen, and my Assemblymember @asm_irwin, for their leadership on the bill. I’m also grateful to the many other neurodegenerative disease organizations that wrote letters in support SB1047: @als, @youralsnetwork, @MichaelJFoxOrg, @curegrn, @curemaptftd, @bluefieldproj, @alzheimersla, @alzorangecounty,  @alzheimerssd.
And thank you to @michellehincheynysenate for her groundbreaking work to create an FTD registry in the Empire State. Her success there helped inspire our work here.
SB 1047 has passed unanimously through California’s Senate. Now we need to get it through the Assembly and to the Governor’s desk to be signed.
Our FTD community deserves to be seen and counted. 
💙
Happy 90th Birthday, Senator Elizabeth Dole. 🇺🇸
Your lifetime of service is extraordinary, but what inspires me most is what came from your own caregiving journey. You saw the millions of military and veteran caregivers who had gone unseen for far too long and turned that experience into action by creating the @elizabethdolefoundation.
Because of your vision, caregivers across this country have an organization that truly understands their needs.
It was a true honor to be recognized by your Foundation with the Tom Hanks Caregiver Champion Award. As a fellow caregiver, receiving that honor meant so much to me. Being in that room, connecting with fellow caregivers, and witnessing the impact you’ve had on so many lives is something I’ll never forget.
Happy Birthday, Senator Dole. Thank you for showing us how one caregiver’s journey can change the lives of so many others. 💙
Summer days ☀️ Summer days ☀️
A few years ago, I couldn’t have told you much a A few years ago, I couldn’t have told you much about brain health.
Today, I know that while we can’t control everything, there is so much we can do to support our brains. I find that incredibly empowering.
This World Brain Day, I’m choosing to focus on hope, not fear. On the small, everyday choices that add up over time. Because taking care of our brains isn’t about being perfect but intentional.
I’d love to hear from you. What’s one thing you’re doing to support your brain health? And if you’re not sure where to start, follow @maketimewellness for actionable ways to support your brain today.

#WorldBrainDay #BrainHealth
Meet the Village 💙 This week on the blog, hospi Meet the Village 💙
This week on the blog, hospice social worker Lisa Pahl, creator of The Dementia Deck, explores something many families don’t talk about until they’re forced to…What would your loved one want if they could no longer make their wishes known?
Through her work supporting families at the end of life, Lisa has seen firsthand how conversations about values, wishes, and quality of life can bring clarity, confidence, and peace during some of the most difficult moments a family will face.
During my book tour for The Unexpected Journey, I met Lisa, who introduced me to the wonderful conversation tool she created called The Dementia Deck. Designed to help families navigate topics that can feel overwhelming to discuss, it’s thoughtful, approachable, and a meaningful way to begin talking about what matters most before difficult decisions need to be made.
💙 Read “I Just Wish I Knew What Mom Would Have Wanted” on the blog at EmmaHemingWillis.com — link in bio.

@thedeathdeck @emmabrucewillisfund

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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