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During World FTD Awareness Week, I want to spotlig During World FTD Awareness Week, I want to spotlight New York State Senator Michelle Hinchey and all she has done for the FTD community.
Senator Hinchey’s father, former Congressman Maurice Hinchey, lived with primary progressive aphasia, a form of FTD. She took that experience and turned it into action.
Because of her leadership, New York became the first state to officially recognize FTD Awareness Week. She then championed the country’s first statewide FTD registry, making sure people diagnosed with FTD in New York are finally seen and counted.
Her leadership has inspired me every step of the way. When New York became the first state to track FTD diagnoses, we knew we needed to bring that same effort to California. With @theaftd and our fierce advocates, we did just that. This week, Governor Newsom signed SB 1047 into law, making California the second state in the country to count FTD diagnoses by adding them to its Neurodegenerative Disease Registry.
Senator Hinchey, thank you for showing us what advocacy can accomplish and for continuing to open doors for the entire FTD community. 💙

@michellehincheynysenate  #endFTD
During World FTD Awareness Week, I want to highlig During World FTD Awareness Week, I want to highlight UnRavelled, an award-winning play that brings together theatre, music, science and visual art to tell a remarkable story about FTD.
The play follows the parallel lives of scientist-turned-painter Anne Adams and composer Maurice Ravel, both of whom were affected by FTD. Through their stories, UnRavelled explores the surprising connection between neurological disease and creativity while bringing greater understanding and humanity to the conversation around dementia.
What drew me to this production is everything they have built around the play. Through the UnRavelled Brain Health Festival, audiences can hear from neurologists, scientists and community experts, ask questions and better understand the real-life impact of FTD. 
I was honored to take part and be on a panel last year, and I’ll be joining one of these conversations again in Philly on Oct. 10th.
UnRavelled will be at Penn Live Arts in Philadelphia October 8–11 and Miller Theatre at Columbia University in New York City October 23–24.
Visit the link in my bio or unravelledplay.com for tickets and more information.
🎭💙

#endFTD #spotlightftd
I can’t go through World FTD Awareness Week with I can’t go through World FTD Awareness Week without talking about Bruce. He is the driving force behind my advocacy. He has opened so many doors for me in this work, and I will continue to walk through them.
I will not let his diagnosis be in vain. I know how proud he would be to know that he is helping families living with FTD, other forms of dementia and their care partners be seen and heard. 
In this next chapter of his life, Bruce continues to build on his legacy. He is, and always will be, a fucking legend. And I am so proud to be his wife. 💙✨
WE DID IT! 💙 Governor Newsom signed SB 1047 int WE DID IT! 💙
Governor Newsom signed SB 1047 into law, making California the second state in the country to track FTD. And what a moment for this to happen, during World FTD Awareness Week 2026!
FTD families deserve to be seen and counted. Today, we are.
I’m so grateful to everyone who helped make this happen. It takes a village 💙

@senrogerniello @senbenallen @asm_irwin @cagovernor @theaftd @michellehincheynysenate @als @youralsnetwork @michaeljfoxorg @curegrn @curemaptftd @bluefieldproj @alzheimersla @alzorangecounty @alzheimerssd @end.chronic.disease @emmabrucewillisfund 

#endFTD #spotlightFTD
Today, during World FTD Awareness Week, Robert Kol Today, during World FTD Awareness Week, Robert Kolker’s The Vanishing Family is officially out.
This book tells the deeply personal story of a family living with an inherited form of FTD caused by a change in a gene called MAPT.
The Vanishing Family brings together this family’s lived experience with the science and research that could lead us toward treatments, not only for FTD, but potentially for other forms of dementia too.
It’s available today wherever books are sold. I hope you will read it, share it and learn more about this extraordinary family and the work being done to move FTD research forward. 

🧠 FTD fact: 60% of FTD cases are sporadic, meaning there is no family history. 40% of cases are known to be familial or genetically driven by an identified genetic mutation causing disease. 

@bobkolker @curemaptftd @doubledaybooks 
#geneticFTD #MAPT #endFTD

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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