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Cure MAPT FTD @curemaptftd.bsky.social · 51m

Since actor Bruce Willis's diagnosis of frontotemporal dementia (FTD) in 2023, his wife Emma Heming Willis has been a fierce advocate for greater FTD awareness. This awareness starts with frontline workers. #SpotlightFTD #EndFTD #FrontotemporalDementia #HealthcareWorkers

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Bob Kolker @robertkolker.com · 28/09/2026

Some tickets left for tonight’s launch (9/28) in Manhattan with Susannah Cahalan (Brain on Fire) - come join us www.92ny.org/event/robert...

92ny.org

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Cure MAPT FTD @curemaptftd.bsky.social · 21/09/2026

On World Alzheimer's Day and every day, remember those suffering from the disease, and also their loved ones who suffer, too. We frontotemporal dementia (FTD) families stand in solidarity, hoping for a cure for both Alzheimer's and FTD. #FrontotemporalDementia #WorldAlzheimersDay

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Cure MAPT FTD @curemaptftd.bsky.social · 15/09/2026

Frontotemporal dementia (FTD) is the most common form of dementia for people under 60. It is a group of brain disorders that progressively affect behavior, personality, language, and/or movement. Recognize the symptoms of FTD. Change a family's future. #FrontotemporalDementia #HealthcareWorkers

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Cure MAPT FTD @curemaptftd.bsky.social · 08/09/2026

FTD is often misdiagnosed because its symptoms differ from other types of dementias. Learn more about FTD in this Washington Post article: ow.ly/6gAR50ZKZar #FrontotemporalDementia #HealthcareWorkers

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Cure MAPT FTD @curemaptftd.bsky.social · 04/09/2026

September is Healthy Aging Month, World Alzheimer's Month, and the start to a season of change. This fall, take the time to learn about rare diseases like frontotemporal dementia (FTD). Recognize the symptoms of FTD. Change a family's future. #FrontotemporalDementia #HealthcareWorkers

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Cure MAPT FTD @curemaptftd.bsky.social · 27/08/2026

There are many subtypes of FTD with varying symptoms. By knowing the red flags, you can speed up the diagnostic process of a patient who otherwise may be misdiagnosed. Ask yourself these questions. Recognize the symptoms of FTD. Change a family's future. #FrontotemporalDementia #HealthcareWorkers

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Cure MAPT FTD @curemaptftd.bsky.social · 18/08/2026

Frontotemporal dementia, or #FTD, can be difficult to recognize—especially when uncharacteristic changes appear in a patient's social interactions, language, and/or physical movements. Recognize the symptoms of FTD. Change a family's future. #FrontotemporalDementia #HealthcareWorkers

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Cure MAPT FTD @curemaptftd.bsky.social · 02/07/2026

In the following weeks and months, thanks to a grant from the Kissick Family Foundation, we will be explaining what FTD is; its symptoms; and what frontline healthcare workers, especially those in Georgia and Florida, can do once they are confronted with a set of confusing symptoms. #ftd #fl #ga

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Cure MAPT FTD @curemaptftd.bsky.social · 03/12/2025

Double Your Impact This Giving Tuesday 💙 Every dollar given will be MATCHED 1:1 up to $15k - helping us reach our $50,000 goal to fuel hope for families facing genetic FTD. www.zeffy.com/en-US/donati...

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Cure MAPT FTD @curemaptftd.bsky.social · 29/11/2025

Look good while doing good: Whether you're a caregiver, scientific researcher, or dementia advocate, our #BlackFriday hoodies, hats and Ts have got you covered. The best news? All your money goes to support our efforts to find a cure. #frontotemporaldementia #ftd. www.bonfire.com/store/cure-m...

bonfire.com

Cure MAPT FTD | We envision a future free of MAPT FTD | Bonfire

WE'RE FIGHTING FOR A FUTURE FREE OF MAPT-RELATED FRONTOTEMPORAL DEMENTIA

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Cure MAPT FTD @curemaptftd.bsky.social · 28/11/2025

We have an exciting announcement! 📣 Cure MAPT FTD merch is finally live!All proceeds will benefit our cause. Whether you're a caregiver, researcher, or passionate advocate, we've got you covered. What other empowering phrases would you like to see in our store? www.bonfire.com/store/cure-m...

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Cure MAPT FTD @curemaptftd.bsky.social · 20/11/2025

Back by popular demand, we’re having another social hour this month! All families and community members are invited 🍁 Register here: us06web.zoom.us/meeting/regi...

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Cure MAPT FTD @curemaptftd.bsky.social · 26/10/2025

Our first Family Social Hour is today at 8PM! Join us to meet other #MAPTFTD families ❤️ #cureMAPTFTD #FTD us06web.zoom.us/meeting/regi...

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The Association For Frontotemporal Degeneration @theaftd.bsky.social · 25/09/2025

Did you know FTD carers experience some of the highest stress levels? No roadmap, limited support, no recognition. The person with FTD may believe, “nothing is wrong”. Others may even blame the carer. 🌎 Learn more: bit.ly/3JIO6u0

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Cure MAPT FTD @curemaptftd.bsky.social · 25/09/2025

MAPT FTD is inherited in an autosomal dominant pattern, meaning if one parent has a MAPT gene, each child has a 50% chance of inheriting it. Almost everyone with the gene will develop symptoms (full penetrance), usually between ages 40-60. In rare cases, onset can be later or never happen at all

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Cure MAPT FTD @curemaptftd.bsky.social · 24/09/2025

This is big news for neurodegenerative diseases!!!

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Cure MAPT FTD @curemaptftd.bsky.social · 23/09/2025

FTD Genes cause different symptoms: MAPT → Changes personality first. Loss of social skills, repetitive behaviors. GRN → Often causes depression/anxiety first, plus movement problems. May affect speech. C9orf72 → Often overlaps with ALS, causing apathy and memory impairment.

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Cure MAPT FTD @curemaptftd.bsky.social · 22/09/2025

On #FTDAwarenessWeek, we’re asking the world to learn about frontotemporal dementia, the most common form of dementia for those under 60. #dementia #ftd #frontotemporaldegeneration

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Cure MAPT FTD

YouTube video by Cure MAPT FTD

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Cure MAPT FTD @curemaptftd.bsky.social · 10/06/2025

Anyone with dementia, cancer or any serious disease in their family should be very concerned about the proposed 40% budget cuts at NIH. Standing with our renowned scientists by signing their petition. #NIH #dementiaresearch #cancerresearch #maptftd www.standupforscience.net/bethesda-dec...

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FTD Disorders Registry @ftdregistry.bsky.social · 06/06/2025

The Registry joined representatives from Cure GRN, @curemaptftd.bsky.social, Cure VCP, & the Progranulin Information Navigator for a visit to @pennftdc.bsky.social. It was a powerful reminder of how research & community collaboration are driving progress to #EndFTD. ftdregistry.org/press/inside...

ftdregistry.org

Inside the Penn FTD Center - FTD Disorders Registry

The FTD Disorders Registry joined FTD community advocates for a behind-the-scenes tour of the Penn FTD Center,

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Cure MAPT FTD @curemaptftd.bsky.social · 03/06/2025

Join us this Friday for a Friday Families meeting! All MAPT FTD families & individuals are welcome. Our esteemed speaker Dr. Nupur Ghoshal, MD PhD will be discussing the Tau protein & how it relates to FTD. Time: 2:30 EST / 11:30 PST RSVP here: addcal.io/e/8dvuabbn7why

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Cure MAPT FTD @curemaptftd.bsky.social · 30/04/2025

We are so excited for this year's AFTD Education conference! Come meet us in person, this Thursday and Friday. We have a table! See you all there ❤️ @theaftd.bsky.social #curemaptftd #maptftd #ftd

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Cure MAPT FTD @curemaptftd.bsky.social · 18/04/2025

This week, Cure MAPT FTD member Linde Jacobs was featured on the podcast "What's Health Got to Do with It?", sharing her experience with FTD. Listen to the podcast here: news.wjct.org/show/whats-h... Available now on all podcast streaming platforms! #curemaptftd #maptftd #npr #nprpodcast #ftd

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Melissa E. Murray @drneurochic.bsky.social · 14/04/2025

Had the pleasure of joining the inspiring Linde Jacobs from @curemaptftd.bsky.social for @npr.org "What's health got to do with it?" Listen in on a moving conversation on resilience as we fight with her and so many others against genetic destiny🧬🧠 npr.org/podcasts/103...

news.wjct.org

Brains on the brink: Fighting fate and defying age

Dr. Joe Sirven explores the fight against genetic destiny and aging.

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Reposted by Cure MAPT FTD

Melissa E. Murray @drneurochic.bsky.social · 11/01/2025

With so many great tau researchers like @leatgrinberg.bsky.social @lucbuee.bsky.social @sjorsscheres.bsky.social @selinawray.bsky.social @karchlab.bsky.social on #SciSky could not help but put together my 1st starterpack⤵️ We are all fighting for you @curemaptftd.bsky.social 💙 go.bsky.app/KHno2VG

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Cure MAPT FTD @curemaptftd.bsky.social · 25/12/2024

Front page on @nytimes.com on Christmas Day❤️ Fighting for all those afflicted with FTD and hoping for a world with more understanding, grace and patience towards those who seem “different”. #endftd

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Tim Viney @vineytj.bsky.social · 22/12/2024

A must-read article for anyone working on #tau and #dementia. I remember Linde Jacobs' important and moving talk at the Tau2024 conference in Washington DC. Her presence at the meeting underscored how important it is to fund and conduct research on tauopathies

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neuralstemcells.bsky.social @neuralstemcells.bsky.social · 23/12/2024

Our hearts go out to the families, patients and caregivers affected by FTD and other neurodegenerative tauopathies. We are proud to collaborate with terrific scientists to improve understanding and advance therapies as part of the #TauConsortium. This is why we do what we do. NYT | zurl.co/hDdSP

zurl.co

A Woman With a Rare Gene Mutation Fights to Avoid Her Mother’s Fate (Gift Article)

A mutant gene is coming to steal Linde Jacobs’s mind. Can she find a way to stop it?

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Reposted by Cure MAPT FTD

The New York Times @nytimes.com · 22/12/2024

Linde Jacobs’s mother died after a genetic mutation gradually laid waste to her brain. Now the same gene is coming for her own mind. Can she find a way to stop it?

nytimes.com

A Woman With a Rare Gene Mutation Fights to Avoid Her Mother’s Fate

A mutant gene is coming to steal Linde Jacobs’s mind. Can she find a way to stop it?

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Cure MAPT FTD @curemaptftd.bsky.social · 22/12/2024

Hello BlueSky. One of our cofounders, Linde Jacobs, is profiled in The New York Times today. It’s a moving snapshot of what an FTD family goes through. Help us fight for therapies that can cure dementia for under 60s. #ftd #aftd #dementia #tau #alzheimers #mapt www.nytimes.com/2024/12/22/h...

nytimes.com

A Woman With a Rare Gene Mutation Fights to Avoid Her Mother’s Fate (Gift Article)

A mutant gene is coming to steal Linde Jacobs’s mind. Can she find a way to stop it?

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