FRONTIER Research Group

Some patients wait five years for diagnosis of 'Australia's biggest killer' Carers say a "broken sector" is letting down their loved ones with dementia, while a new study shows "confronting" diagnosis delays.

Linked ABC article: www.abc.net.au/news/2025-10...

Survival rates in frontotemporal dementia and Alzheimer’s disease To evaluate the survival rates in well-characterized cohorts of frontotemporal dementia (FTD) subtypes – behavioral variant (bvFTD), progressive nonfluent aphasia (PNFA), and semantic dementia (SD)...

You can now access free ePrints of our article via the below link:

www.tandfonline.com/eprint/HHXMM...

@tandfresearch.bsky.social

#endFTD

A Bayesian analysis of diagnostic timelines across Alzheimer's disease, frontotemporal dementia, and other neurodegenerative conditions INTRODUCTION Timely diagnosis is crucial for managing neurodegenerative conditions. This study investigated whether time from symptom onset to diagnosis differs by clinical syndrome and sex. METHO...

New study by @a-ambikairajah.bsky.social which investigates the time to diagnosis of the frontotemporal lobar degeneration syndromes relative to Alzheimer's disease.

dx.doi.org/10.1002/dad2...

@brainandmindcentre.bsky.social
@uccarat.bsky.social
@alzdemjournals.bsky.social

#endFTD

A proud day for the FRONTIER Group as we hosted our 2025 Information Day.

Huge thanks to our fantastic speakers, Olivier, David, Richard, Mirelle, and Manisha, for sharing their insights, and to Penny for her brilliant coordination in making the day such a success.

#WorldFTDAwarenessWeek
#endFTD

YouTube video by Cure MAPT FTD Cure MAPT FTD

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

World FTD Awareness Week begins today! FTD often starts between ages 45–65, making it the most common dementia under 60. Let’s raise awareness and drive research toward treatments and a cure. #EndFTD #FTDAwareness #USA

🌟 Proud moment for our students!

During placement, #students teamed up with people living with #dementia & #primaryprogressiveaphasia to co-design this resource for #DementiaAwarenessMonth:

🔗 lnkd.in/gCgq4nXU

Share to spark conversation, raise #awareness, & amplify voices with #livedexperience! 💛

The problem of misdiagnosis in frontotemporal dementia - ABC listen Frontotemporal dementia has been in the headlines recently because of the diagnosis of Bruce Willis in 2023.  It's one of the most common forms of younger-onset dementia but there are fears many case...

ABC Listen ✅ www.abc.net.au/listen/progr...

in conversation with Prof Olivier Piguet. Experts want the diagnostic guidelines for FTD to be broadened, as they currently exclude patients with #MemoryLoss

@frontier-usyd.bsky.social

Restrictive criteria for frontotemporal dementia lead to late treatment Dementia experts at the University of Sydney are calling for a review of criteria to help families, carers and patients receive support earlier in their illness.

📰 Researchers call for updates to diagnostic criteria for bvFTD, in study published in Alz & Dementia

BvFTD is the most common form of FTD accounting for up to 70% of cases.

Prof Olivier_Piguet Director @frontier-usyd.bsky.social

✅ bit.ly/RestrictiveC...

The Unexpected Journey by Emma Heming Willis is out now! Lauren Massimo, Co-Director of the Penn FTD Center, contributed to The Unexpected Journey!

Emma provided an exclusive highlight for the Penn FTD Center. Read more at the link in our bio and on our website!

Carer Research Study - ftdtoolkit Carer Research Study - ftdtoolkit, Norwich. 4 likes · 5 talking about this. Are you caring for a family member or in-law with frontotemporal dementia? We're conducting a study to better understand...

Good news! The FTDToolkit is now open to international participants. Australians supporting someone living with FTD can now sign up and access this valuable resource. Visit their Facebook page for details on how to register.
www.facebook.com/ftdtoolkit

@uniofeastanglia.bsky.social

Blood clue for frontotemporal #dementia (FTD)? Lower blood levels of myelin-linked fats (hexosylceramides) in people with behavioural variant FTD mirrored white-matter damage on MRI and tracked with disease duration –pointing to a potential monitoring #biomarker.
#FTD #DementiaResearch #Biomarkers

Join @sydney.edu.au experts to explore healthy ageing, new research into the ethics and science of dementia prevention.

Featuring @brainandmindcentre.bsky.social researchers Eleanor Drummond & Olivier Piguet, sociologist Gilbert Knaggs from FASS, and host Elfy Scott.

Register now: bit.ly/4pq3tYP

FRONTIER FTD Research Group

For Dementia Awareness Month, we’ve given the FRONTIER website a fresh new look! It’s now easier to access information and explore the research we’ve built over the years. A big thank you to our participants, without your support, our work would not be possible.

www.frontierftd.org

#endFTD

Emma Heming Willis interviewed by Diane Sawyer in a Prime Time Special, with both sitting in a room, as shown in an ABC News segment.

Emma Heming Willis was interviewed Tuesday night on “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special,” sharing her family’s experience of living with FTD.

🔴 Learn more: https://bit.ly/47Ny0sS

@wiley.com

Younger-onset dementia patients missing out on timely diagnosis Dementia researchers are calling for changes to the way one of the most common forms of younger-onset dementia is diagnosed, arguing current guidelines are overly restrictive and could delay access to...

It's nice to see our research receiving the media attention it deserves. #endFTD

www.abc.net.au/news/health/...

Here is the linked paper:

alz-journals.onlinelibrary.wiley.com/doi/full/10....

@brainandmindcentre.bsky.social
@sydney.edu.au
@alzdemjournals.bsky.social
@alzassociation.bsky.social

https://www.speechpathologyaustralia.org.au/EventDetail?EventKey=25PEV2&fbclid=IwY2xjawMbNNJleHRuA2FlbQIxMABicmlkETFNZG0wZGRxazhmSThsVEdIAR54NiPQB5YxM-EeKjrmi3BvefiiEJpvRiS7F1bYc2YRH4jY0OFX9i3qM9c1-Q_aem_RBbxpUy9e2Im0c7AM9g3sw

Are you living with or supporting someone with #primaryprogressiveaphasia?

Join leading neuroscientists and speech pathologists on 25th September for a FREE webinar exploring the latest research on PPA and how speech pathology can make a difference.

@ppaphasiaawareness.bsky.social

Interesting research, Jordi!

Position open for a neuroimaging focused postdoc to come work with us in Sydney

Feel free to get in touch for a chat if you have any questions about it :)

usyd.wd105.myworkdayjobs.com/en-GB/USYD_E...

And we’ve done it again! Congratulations to Olivier, Cristian, Kirrie, Jordan, and David for braving the weather yesterday to run the City2Surf. Once again, the team raised vital funds for the AFTDA. There’s still time to donate to this important cause! city2surf25.grassrootz.com/australian-f...

Life under the microscope - When Art Meets Science image prize and exhibition

Celebrate National Science Week on Wed 13 August with @centenaryinstitute.bsky.social - an exhibition highlighting the beauty of science, life under the microscope, and more!

Includes a live panel with journalist Sophie Scott + researchers.

Register for free: srkr.io/63329guT

@annavolkmer.bsky.social could you please repost the link? It doesn't appear to work from this (down under) side of the world.

Excellent elevator pitch, @sterredeboer.bsky.social!

Better Conversations training is going down under!

@jadecartwright.bsky.social @lissbee.bsky.social @aphasiacre.bsky.social

Any Australian speech pathologists interested in attending our training:

Sydney - Monday 10th Nov

Perth - Monday 17th November

Sign up here: ucl.ac.uk/brain-sciences…

FRONTIER's information day is on Wednesday 24th September. Scan the QR to learn more.

#endFTD

New (workable) link: onlinelibrary.wiley.com/doi/10.1111/...

Missing #AAIC25 or just too much to see? Take a look at the Dementia Researcher YouTube Channel where we have researchers taking the ‘Research in a Short’ Challenge presenting their work in 3 minutes or less

youtube.com/@dementiares...

@sterredeboer.bsky.social You get more brownie points if you can coordinate an all-in group photo :)

Amazing! Sooo good to see the band get back together!!