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frontier-usyd.bsky.social
FRONTIER Research Group
@frontier-usyd.bsky.social
160 followers 150 following 51 posts
The FRONTIER Research Group is the largest specialist #frontotemporaldementia research clinic in Australia. Since 2007, we have specialised in the diagnosis, prognosis, and care of people with #FTD and related conditions. #endFTD https://frontierftd.org
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frontier-usyd.bsky.social
We’re deeply grateful to #DementiaSupportAustralia and #AFTDA for creating Carer Conversations, a lifeline for people across Australia who are supporting someone living with #frontotemporaldementia.

www.dementia.com.au/resource-hub...

#endFTD
Irene and Lottie find the right support at a challenging time
Irene and Lottie find essential support and resources through Carer Conversations to navigate the challenges of caring for a loved one with Frontotemporal Dementia.
www.dementia.com.au
December 3, 2025 at 11:54 PM
Reposted by FRONTIER Research Group
icppa.bsky.social
International Conference on PPA Updates:

The meeting will now be July 16-17th, just after #AAIC in London, UK.

The Call for Papers is ready! Abstract submissions are due 1/15/2026 speechtherapyppa.com/icppa-confer...

#ICPPA2026 #PPAResearch
@mayalhenry.bsky.social
@annavolkmer.bsky.social
ICPPA Conference | Speech Therapy PPA
Advancing interdisciplinary PPA research and care
speechtherapyppa.com
October 13, 2025 at 8:15 AM
Reposted by FRONTIER Research Group
theaftd.bsky.social
Join us for an inside look at the progress shaping FTD research. On 12/10 at 3 pm, AFTD experts Dr. Penny D. and Dr. Chiadi O. will discuss advancements from 2025 & the momentum driving us toward effective treatments in the years ahead. Sponsored by Passage Bio

Register now: https://bit.ly/4rfNmOq
Promotional image for a webinar titled "FTD Research 2025: Paving the Path Towards Effective Treatments" scheduled for December 10, 2025, featuring Penny Dacks, AFTD Chief Scientific Officer and FTD Disorders Registry President, and Chiadi Onyike, AFTD's Medical Advisory Council Chair and Johns Hopkins University's Frontotemporal Dementia and Young-Onset Dementias Clinic Director. Sponsored by Passage Bio.
November 20, 2025 at 9:09 PM
frontier-usyd.bsky.social
Another successful FRONTIER Charity Golf Day in Tumut! We’re deeply grateful to the Tumut community and the Dean family for their incredible support. Your support makes it possible for us to advance our understanding and treatment of #FTD.

#endFTD #PPA

@brainandmindcentre.bsky.social
November 16, 2025 at 5:59 AM
Reposted by FRONTIER Research Group
theaftd.bsky.social
Results from Alector Therapeutics’ Phase 3 trial for Latozinemab (AL001), designed for people with FTD caused by GRN variants, have raised important questions for many. Join us on Nov. 6 for a live discussion about what these results mean and what’s next for FTD research: https://bit.ly/3Lw3Sco
Promotional banner for Alector Clinical Trial Results Townhall on Thursday, November 6, 2025, at 3:00 p.m. ET, featuring Carmela Tartaglia and Penny Dacks from The Association for Frontotemporal Degeneration. Includes headshots and titles of the speakers.
October 30, 2025 at 3:49 PM
frontier-usyd.bsky.social
Join ISFTD's Webinar on AI in FTD: From Neuropathology to MRI to Clinic

Wednesday, 29th October, 2025 at 11:00 AM EST.

www.isftd.org/events/webin...

#endFTD
#ISFTD
ISFTD Webinar on AI in FTD: From Neuropathology to MRI to Clinic - ISFTD
www.isftd.org
October 29, 2025 at 6:17 AM
Reposted by FRONTIER Research Group
annavolkmer.bsky.social
Just over two weeks until our Better Conversations course in Sydney & three weeks until Perth.

Shouting out to all Speech Pathologists in NSW and WA- we’d love to see you.

And there are places still available!!!

Sign up: www.ucl.ac.uk/brain-scienc...
Training Courses and Events
Upcoming Better Conversations events are advertised here. The Better Conversations conference is held every two years. We run communication partner training approximately twice per year.
www.ucl.ac.uk
October 24, 2025 at 8:57 AM
Reposted by FRONTIER Research Group
ftdregistry.bsky.social
Alector has announced results from its Phase 3 trial of latozinemab (AL001) for FTD-GRN. While the study did not meet its goals, it offers insight that will guide future FTD research. Thank you to all who participated and continue to advance FTD research. Learn more: ftdregistry.org/press/alecto...
Alector Announces Results from Phase 3 INFRONT-3 Trial of Latozinemab for FTD-GRN - FTD Disorders Registry
Alector has announced topline results from its Phase 3 INFRONT-3 trial of latozinemab for FTD-GRN.
ftdregistry.org
October 22, 2025 at 4:51 PM
frontier-usyd.bsky.social
Recorded videos from our FRONTIER information day are now on our Youtube channel. In this video, David Foxe discusses how everyday function, cognition, and behaviour change over time in FTD and PPA.

www.youtube.com/watch?v=hQWX...

@brainandmindcentre.bsky.social
#endFTD
How everyday function, cognition, and behaviour change over time in FTD and PPA - Dr David Foxe
YouTube video by FRONTIER FTD Research Group
www.youtube.com
October 19, 2025 at 5:06 AM
Reposted by FRONTIER Research Group
sydneyideas.bsky.social
In our latest Sydney Ideas public conversation, University of Sydney experts explored the science and ethics of ageing, new insights into dementia, and the facts vs fads behind anti-ageing promises.

Missed it? You can now catch up on video and podcast: srkr.io/63321SJV
Slow ageing - Sydney Ideas event in September 2025
October 14, 2025 at 6:30 AM
frontier-usyd.bsky.social
New paper by Tao Chen and colleagues which explores the direction of atrophy progression in the behavioural variant of frontotemporal dementia

dx.doi.org/10.1002/hbm....

@muireannirish.bsky.social
@brainandmindcentre.bsky.social
@sydney.edu.au
@wiley.com

#endFTD
Anterior Insula Drives Progressive Structural Brain Network Atrophy in the Behavioural Variant of Frontotemporal Dementia
The causal structural covariance network (CaSCN) and event-based model analysis demonstrated progression of structural atrophy in the behavioural variant of frontotemporal dementia (bvFTD) from the l...
dx.doi.org
October 12, 2025 at 11:31 PM
frontier-usyd.bsky.social
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 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...
dx.doi.org
September 30, 2025 at 4:25 AM
frontier-usyd.bsky.social
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
September 24, 2025 at 3:06 AM
Reposted by FRONTIER Research Group
curemaptftd.bsky.social
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
Cure MAPT FTD
YouTube video by Cure MAPT FTD
youtu.be
September 22, 2025 at 9:53 PM
Reposted by FRONTIER Research Group
ftdregistry.bsky.social
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
September 21, 2025 at 12:24 PM
Reposted by FRONTIER Research Group
abicommlab.bsky.social
🌟 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! 💛
September 18, 2025 at 5:49 AM
Reposted by FRONTIER Research Group
brainandmindcentre.bsky.social
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
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...
www.abc.net.au
September 14, 2025 at 11:52 PM
Reposted by FRONTIER Research Group
brainandmindcentre.bsky.social
📰 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...
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.
bit.ly
September 12, 2025 at 5:12 AM
Reposted by FRONTIER Research Group
pennftdc.bsky.social
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!
September 10, 2025 at 5:44 PM
frontier-usyd.bsky.social
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
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...
www.facebook.com
September 11, 2025 at 1:10 AM
Reposted by FRONTIER Research Group
sydney-crf.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
September 7, 2025 at 10:11 PM
Reposted by FRONTIER Research Group
sydneyideas.bsky.social
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
September 5, 2025 at 12:18 AM
frontier-usyd.bsky.social
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
FRONTIER FTD Research Group
www.frontierftd.org
September 4, 2025 at 11:34 PM
Reposted by FRONTIER Research Group
theaftd.bsky.social
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
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.
August 27, 2025 at 7:56 PM
frontier-usyd.bsky.social
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
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...
www.abc.net.au
August 27, 2025 at 11:21 PM