iiinova — where your digital self keeps evolving

FRONTIER Research Group @frontier-usyd.bsky.social · 21/09/2026

“I know what I want to say… but it won’t come out.” Meet Kathy, who lives with #PPA. She shares the challenges of finding her words, the things she enjoys and continues to do, and the support she has found through FRONTIER. Watch Kathy’s story: youtu.be/WyHaiH8t9Sg #DementiaAwarenessMonth #endFTD

youtu.be

Living with primary progressive aphasia | Kathy’s story

YouTube video by FRONTIER FTD Research Group

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FRONTIER Research Group @frontier-usyd.bsky.social · 14/09/2026

Changes in motivation, including apathy and loss of interest, can be among the earliest symptoms of #FTD. In this video, @muireannirish.bsky.social explains how her research is helping to identify these changes earlier, improve diagnosis, and develop practical resources. youtu.be/b-XowXVqK1M

youtube.com

Understanding motivation in frontotemporal dementia | Prof Muireann Irish

YouTube video by FRONTIER FTD Research Group

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FRONTIER Research Group @frontier-usyd.bsky.social · 01/09/2026

For many people, receiving a dementia diagnosis can take years, especially for rarer conditions such as #FTD. In this video, FRONTIER researcher Dr David Foxe discusses how research is improving dementia diagnosis through new cognitive, behavioural and brain imaging tools. youtu.be/dP9Qp4-bxLI

youtu.be

Improving Dementia Diagnosis Through Research and Clinical Innovation

YouTube video by FRONTIER FTD Research Group

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Reposted by FRONTIER Research Group

Brain Support Network @brainsupportnet.bsky.social · 25/08/2026

Automated Speech Analysis to Identify Clinical, Anatomical, and Pathological Variants of Primary Progressive Aphasia ( #PPA ) Read at JAMA: jamanetwork.com/journals/jam...

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Reposted by FRONTIER Research Group

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 12/08/2026

📢 Join us next week! On August 19 at 3 pm ET, AFTD’s CME webinar, “Neurologists and Genetic Counselors Partnering to Enhance Patient Care,” will feature David Irwin, MD and Laynie Dratch, ScM, CGC, discussing FTD diagnosis, genetic testing, and patient care. 🔗 Register: bit.ly/4hahVCi

The image is a promotional flyer for a healthcare professional webinar by The Association for Frontotemporal Degeneration. It features a red banner with the text "Join Us Next Week" and "Neurologists and Genetic Counselors Partnering to Enhance Patient Care." The event is scheduled for Wednesday, August 19, 2026, from 3 pm to 4 pm ET, and offers CME credit for viewing. Photos of two speakers, David Irwin and Laynie Dratch, are included with their titles and affiliations.

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FRONTIER Research Group @frontier-usyd.bsky.social · 30/07/2026

On Sun 9 August, the FRONTIER team will be taking part in #City2Surf to raise funds for the Australian Frontotemporal Dementia Association (AFTDA). If you're able to support our team, we'd greatly appreciate it: city2surf26.grassrootz.com/australian-f... #endFTD @brainandmindcentre.bsky.social

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FTD Disorders Registry @ftdregistry.bsky.social · 09/07/2026

You do not need a diagnosis to join. Anyone with an interest in FTD research can be part of the Registry: www.FTDRegistry.org #FTDResearch #FrontotemporalDegeneration #endFTD

Your participation makes a difference.
Anyone with an interest in FTD research can join the FTD Disorders Registry.
Eligible adults in the US and Canada may also participate in the Registry Research Study.
Your information is kept safe and confidential.
Your participation helps researchers today and for generations to come.
www.FTDregistry.org

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Reposted by FRONTIER Research Group

Maya Henry @mayalhenry.bsky.social · 09/07/2026

The International Conference on PPA is one week away! If you can't join us in London, tune in for the virtual meeting and hear the latest on interdisciplinary research and care for PPA. www.speechtherapyppa.com/icppa-confer... @annavolkmer.bsky.social @icppa.bsky.social

speechtherapyppa.com

ICPPA Conference registration | Speech Therapy PPA

Conference registration for the International Conference on Primary Progressive Aphasia (ICPPA) 2026 in London, UK. July 16-17th, 2026.

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Reposted by FRONTIER Research Group

Penn FTD Center @pennftdc.bsky.social · 30/06/2026

The Penn FTD Center is delighted to be working with ISFTD to host Caregivers Day, a one-day conference for family members and professional caregivers to learn more about advances in research and approaches to care. Use the link in our bio to get more information and register today!

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Reposted by FRONTIER Research Group

ABI Communication Lab 🧠 🌱 💬 @abicommlab.bsky.social · 08/07/2026

📣 Sydney Aphssia Social Group event - join us for a afternoon designed for people with #aphasia and their supporters to connect! 📅 Thursday, 16 July 2026 ⏰ 11 AM - 1:30 PM 🏫 Pastizzi Cafe - North King Street 📍 109 King St, Newtown NSW 2042 👉 Register here: events.humanitix.com/sydney-aphas...

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Dementia Researcher @dementiaresearcher.bsky.social · 06/07/2026

FTD can affect behaviour, personality, empathy and relationships. Dr Carmela Tartaglia explains why brain changes can change how someone connects with the people around them. Watch the full @istaart.bsky.social Relay Live show now - youtube.com/live/2-dZUuO...

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FRONTIER Research Group @frontier-usyd.bsky.social · 06/07/2026

New preprint: Utility of a Subdomain-Based ACE-III Online Dementia Screening Tool We developed and externally validated a probability-based dementia screening approach using ACE-III subdomain profiles rather than total scores. sydney-informatics-hub.github.io/ace3tool/ doi.org/10.31234/osf...

sydney-informatics-hub.github.io

ACE-III online dementia screening tool | FRONTIER Research

This tool is designed to assist clinicians in screening patients for dementia. The tool was developed by the FRONTIER Research Group at the University of Sydney, and implemented by the Sydney Informat...

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FRONTIER Research Group @frontier-usyd.bsky.social · 25/06/2026

New preprint from @samuelwarren.bsky.social , @lee-faylow.bsky.social , @profyun-heejeon.bsky.social , @muireannirish.bsky.social and colleagues introducing the MotDem, an age-appropriate measure of motivation. doi.org/10.64898/202... @brainandmindcentre.bsky.social

doi.org

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The Association For Frontotemporal Degeneration @theaftd.bsky.social · 24/06/2026

While there is currently no cure for FTD, treatment can help manage symptoms and improve quality of life. Swipe through to learn more about treatment approaches and support options for people living with FTD. 🔗 Learn more about treating FTD: bit.ly/4uxiwB8

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FRONTIER Research Group @frontier-usyd.bsky.social · 20/05/2026

Curious about what FRONTIER does? This new video breaks it down. Hear from Prof Olivier Piguet on how our clinic and research programs come together to advance the field. www.youtube.com/watch?v=JRYA...

youtube.com

The FRONTIER Frontotemporal Dementia Research Group

YouTube video by FRONTIER FTD Research Group

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Brain and Mind Centre @brainandmindcentre.bsky.social · 23/03/2026

⭐ Welcome to our new Co-Director Professor Ben Colagiuri ⭐ We sat down to talk to Ben about his new role and what he's looking forward to at Brain and Mind Centre Read our 'In Conversation with Ben' here -> bit.ly/InConversati...

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Reposted by FRONTIER Research Group

neurologicpodcast.bsky.social @neurologicpodcast.bsky.social · 09/01/2026

Start your year by revisiting one of our older episodes 🎙️ Dr. Muireann Irish shares how dementia changes memory, imagination, and joy. Listen here: open.spotify.com/episode/0iuX...

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FRONTIER Research Group @frontier-usyd.bsky.social · 16/03/2026

Have you or someone you know been diagnosed with young onset dementia (onset < age 65)? We’re conducting a research study on Australian's experiences accessing care and support (e.g. the NDIS) after diagnosis. Learn more or take part: redcap.sydney.edu.au/surveys/?s=Y... @fionakumfor.bsky.social

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FRONTIER Research Group @frontier-usyd.bsky.social · 27/02/2026

Primary Progressive Aphasia Awareness Day Australia 2026 Free webinar: Friday 10 April, 12:00–1:30pm AEST (Zoom) Hear from specialist clinicians on how early intervention supports people with PPA, including younger‑onset, to keep living well and doing what matters. Register: bit.ly/PPAAwareness...

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FRONTIER Research Group @frontier-usyd.bsky.social · 27/02/2026

YOD‑SIG is hosting its first 2026 webinar on 12 March, 12:30–1:30pm AEDT. Let us Grow explores how creative and inclusive activities can support people with young onset dementia to live meaningful, connected lives. Register: events.humanitix.com/let-us-grow-... #YOD #dementia

events.humanitix.com

Let us Grow: Life, Creativity and Connection

Attend this free webinar for insights from people who have living experience with young onset dementia and how they challenge themselves to live their best life

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FRONTIER Research Group @frontier-usyd.bsky.social · 26/02/2026

We’re pleased to share the personal story of Siân Jarrett. Her generous philanthropy has been instrumental in supporting the provision of speech therapy to so many through FRONTIER’s Speech Pathology Clinic, the PPA Communication Project. go.sydney.edu.au/aenRtO @brainandmindcentre.bsky.social

go.sydney.edu.au

Finding Voice Through Loss: how a gift is empowering dementia care

A widow’s gift to the Brain and Mind Centre is supporting vital communication therapy for people with Primary Progressive Aphasia, transforming personal loss into lasting impact for dementia care and ...

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FTD Disorders Registry @ftdregistry.bsky.social · 18/02/2026

Some behaviors related to FTD can lead to unexpected interactions with the criminal justice system. This month’s Quick Question asks whether you or your loved one have experienced this. Share your voice: ftdregistry.org/quick-questi... #endFTD

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FRONTIER Research Group @frontier-usyd.bsky.social · 19/02/2026

Professor Eneida Mioshi and her team at @uniofeastanglia.bsky.social (UK) are developing a free, online intervention designed to support family carers of people living with #frontotemporaldementia (FTD). To participate or learn more about the program, visit ftdtoolkit.org #endFTD

ftdtoolkit.org

FTDToolkit

A novel online platform to monitor symptom progression in Frontotemporal Dementia and carers’ wellbeing

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Reposted by FRONTIER Research Group

ABI Communication Lab 🧠 🌱 💬 @abicommlab.bsky.social · 05/02/2026

📣 The ABI Communication Lab is excited to invite you to our next Sydney Aphasia Social Group event! 💬 🗓 Tuesday, 24 February 2026 ⏰ 11:00 AM – 1:00 PM 📍 Level 4, Susan Wakil Health Building, The University of Sydney 👉 Register here: events.humanitix.com/sydney-aphas...

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FRONTIER Research Group @frontier-usyd.bsky.social · 30/01/2026

Congratulations to Jane Dean on being named the 2026 Snowy Valleys Citizen Achievement Award! Jane, Stephen, and their family have made an extraordinary contribution to raising awareness and funds for #FTD research within the Tumut community. #endFTD www.snowyvalleys.nsw.gov.au/News-Media/S...

snowyvalleys.nsw.gov.au

Snowy Valleys Council 2026 Australia Day Awards Announced

The 2026 Snowy Valleys Council Australia Day Award recipients were announced at a special dinner ceremony held on Saturday 24 January, with invited finalist nominees joining Councillors and dignitarie...

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The Association For Frontotemporal Degeneration @theaftd.bsky.social · 19/12/2025

GemVax & KAEL report positive safety and tolerability data for its Phase 2 trial for GV1001 in people with #PSP. The trial also showed some potential efficacy for the drug to slow disease progression. ➡️ Click here to learn more: bit.ly/44qUxcM

Image displaying a laboratory scene with two individuals working, coinciding with an announcement 'GemVax & Kael Announces Results from Phase 2 PSP Study'

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Reposted by FRONTIER Research Group

ABI Communication Lab 🧠 🌱 💬 @abicommlab.bsky.social · 10/12/2025

The #UniversityofSydney SPEECH Clinic is now taking on clients interested in the 10-week convers-ABI-lity program! The SPEECH Clinic will be taking on new adult clients and will be offering assessment and treatment sessions. If interested, please reach out to petra.avramovic@sydney.edu.au

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The PSP Association @pspassociation.bsky.social · 09/12/2025

The Nature Partner Journals Dementia are looking for essays from clinicians and researchers who have experience with all forms of Dementia. The essays will be collated together to create "The Human Connection". Learn more here: ow.ly/9yrK50XAyH1 #researchers #journal #essays #personalexperiences

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The Association For Frontotemporal Degeneration @theaftd.bsky.social · 20/11/2025

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: 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.

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FRONTIER Research Group @frontier-usyd.bsky.social · 16/11/2025

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

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The Association For Frontotemporal Degeneration @theaftd.bsky.social · 30/10/2025

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: 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.

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FRONTIER Research Group @frontier-usyd.bsky.social · 29/10/2025

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.org

ISFTD Webinar on AI in FTD: From Neuropathology to MRI to Clinic - ISFTD

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Dr Anna Volkmer @annavolkmer.bsky.social · 24/10/2025

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...

ucl.ac.uk

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.

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FTD Disorders Registry @ftdregistry.bsky.social · 22/10/2025

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...

ftdregistry.org

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.

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FRONTIER Research Group @frontier-usyd.bsky.social · 19/10/2025

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

youtube.com

How everyday function, cognition, and behaviour change over time in FTD and PPA - Dr David Foxe

YouTube video by FRONTIER FTD Research Group

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Sydney Ideas @sydneyideas.bsky.social · 14/10/2025

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

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FRONTIER Research Group @frontier-usyd.bsky.social · 24/09/2025

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

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