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: https://bit.ly/3JIO6u0

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

This is big news for neurodegenerative diseases!!!

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.

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

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...

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...

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

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

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

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...

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

We are so grateful for all those trying solve and stop these diseases. We are honored to fight along side all of you!

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

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

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

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?

There are panel genetic tests that can be done. If you look at this website on the AFTD page, you may be able to find ways to get genetic testing. www.theaftd.org/ftd-genetics...

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...