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As we get closer to finding out whether SB 1047 mo As we get closer to finding out whether SB 1047 moves through Appropriations, I keep thinking about how much work has gone into getting us to this point.
Whatever happens next, I feel really good about what we’ve done together. AFTD, our relentless FTD advocates, @senrogerniello and Senator @benallenca , @asm_irwin, and so many others have shown up with real passion for our community and for why FTD needs to be seen and counted.
We’ve walked the halls, knocked on doors, shared our stories at the State Capitol, and made sure people understand why data matters.
Of course, I want this bill to keep moving through the Assembly and onto the Governor’s desk. But I’m also taking a moment to feel proud of how far we’ve come and grateful to everyone who helped get us here.
It takes a village. Onward 💙

#SB1047 #endFTD
The actual purpose of this post was to talk about The actual purpose of this post was to talk about the importance of making time for a hobby or trying something new, and how beneficial that can be for our brain health. In my case, it was harvesting lavender from our garden for the first time, then bundling and drying it out. Getting stung in the process wasn’t supposed to be part of the equation. 🐝🪻
This week on the blog, I’m so happy to welcome A This week on the blog, I’m so happy to welcome Ai-jen Poo, Executive Director of Caring Across Generations. Ai-jen is someone I deeply respect, and when she talks about care in this country, I listen and learn.
Ai-jen believes the people closest to the challenges of care often have the best ideas for how to solve them. That’s the idea behind One Million Care Conversations, a national effort to hear directly from caregivers, families, older adults, disabled people, and care workers about what they need and what would actually make care better.
I was honored to help launch this initiative with @aijenp and @senatorandykim earlier this year. And now Ai-jen wants to hear from you. What do you need? What would make caregiving better? What do you wish someone had understood from day one? Your experience and your ideas can help shape what the future of care looks like in this country.
💙 Read Ai-jen’s piece “Have Ideas About Caregiving? We’re Listening.” and learn how to add your voice to One Million Care Conversations. Link in bio.
My first lavender harvest! I planted these a few y My first lavender harvest! I planted these a few years ago and now I can finally cut, bundle, and dry my own lavender. Any tips welcome! 💜🪻
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, @end.chronic.disease, @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. 
💙

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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