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FRONTIER Research Group

@frontier-usyd.bsky.social
209 followers 248 following 83 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 frontierftd.org

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FRONTIER Research Group @frontier-usyd.bsky.social · 21/09/2026
@brainandmindcentre.bsky.social @sydney.edu.au
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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
New paper by @tao-usyd.bsky.social exploring behavioural and psychological symptom determinants of carer burden in #FTLD and #AD. link.springer.com/article/10.1... @brainandmindcentre.bsky.social @springer.springernature.com @springernature.com @muireannirish.bsky.social @sydney.edu.au #endFTD
link.springer.com
Behavioural and psychological symptom determinants of carer burden across clinical syndromes associated with frontotemporal lobar degeneration and Alzheimer’s disease: a transdiagnostic analysis - Jou...
Background This study characterised overall transdiagnostic associations between psychological and behavioural symptoms and carer burden, and examined syndrome-specific contributions across clinically...
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FRONTIER Research Group @frontier-usyd.bsky.social · 14/09/2026
#DementiaAwarenessMonth #Dementia #endFTD #YoungerOnsetDementia @brainandmindcentre.bsky.social @newsroomusyd.bsky.social @sydney.edu.au
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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
#DementiaAwarenessMonth #Dementia #endFTD #YoungerOnsetDementia @brainandmindcentre.bsky.social @newsroomusyd.bsky.social @sydney.edu.au
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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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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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FRONTIER Research Group @frontier-usyd.bsky.social · 25/08/2026
New paper by @sharonsavage.bsky.social exploring language impairments in behavioural variant frontotemporal dementia and how they compare with semantic dementia. doi.org/10.1007/s004... @brainandmindcentre.bsky.social @springer.springernature.com @springernature.com #endFTD
link.springer.com
Language impairments in behavioural variant frontotemporal dementia: a comparative study with semantic dementia - Journal of Neurology
Introduction Recent evidence suggests that individuals with behavioural variant frontotemporal dementia (bvFTD) may experience language changes in a similar, but less severe manner, than what is obser...
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FRONTIER Research Group @frontier-usyd.bsky.social · 24/08/2026
Are you an Australian living with dementia? @theguardian.com is seeking perspectives from people with lived experience. Share your story here: www.theguardian.com/global/2026/... #endFTD
theguardian.com
Are you an Australian living with dementia? We’d like to hear from you
Tell us about your experience and what supports and awareness are needed for our new series
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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 · 11/08/2026
Congratulations to our FRONTIER runners, and especially to the Dean family. Together, we raised over $4,400 for AFTDA. These funds will help provide much-needed support for Australians living with frontotemporal dementia. city2surf26.grassrootz.com/australian-f... #endFTD
city2surf26.grassrootz.com
FRONTIER in 2026 Voltaren City2Surf
FRONTIER, the frontotemporal dementia clinical research group at the Brain & Mind Centre of the University of Sydney, is running again in this year’s City to Surf. We are raising funds for the Austra...
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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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FRONTIER Research Group @frontier-usyd.bsky.social · 10/07/2026
www.smh.com.au/national/nsw... @brainandmindcentre.bsky.social @sydney.edu.au #endFTD
smh.com.au
Charlie’s dad died of a rare disease often misdiagnosed that made him ‘angry and rude’
Richard Stowe was diagnosed with early onset dementia at 53, and slowly deteriorated over the decade that followed.
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FRONTIER Research Group @frontier-usyd.bsky.social · 10/07/2026
A huge thank you to Charlie Stowe for helping raise awareness and critical research funds for #FTD. Wishing Charlie all the very best as he sets off on his 300km walk tomorrow. www.instagram.com/reel/DakYECv... If you'd like to support Charlie, please consider making a donation: bit.ly/4eV6ltr
instagram.com
Madison Scott on Instagram: "19-year-old Charlie Stowe is hiking 300km from Sydney to Newcastle to raise money for research into Frontotemporal Dementia - a cause close to his heart. You can donate in...
66 likes, 1 comments - madisonscott_9news on July 9, 2026: "19-year-old Charlie Stowe is hiking 300km from Sydney to Newcastle to raise money for research into Frontotemporal Dementia - a cause close ...
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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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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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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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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
Trained using a FRONTIER cohort and externally validated with CheBA UNSW cohort, the model outperformed traditional ACE-III total-score approaches and achieved 88.7% accuracy in independent validation. Collab with Sydney Informatics Hub @sydney-crf.bsky.social @brainandmindcentre.bsky.social
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 · 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 · 01/07/2026
This link provides free access to the paper: www.tandfonline.com/eprint/Z3UXS...
tandfonline.com
Understanding the multifaceted nature of quality of life in dementia using a transdiagnostic network analysis approach
Efforts to improve quality of life (QOL) in dementia depend on its accurate conceptualization and assessment. We employed a data-driven network approach to examine the structure of relationships be...
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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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FRONTIER Research Group @frontier-usyd.bsky.social · 25/06/2026
This is a great explanation of dementia by Dr Ananthan Ambikairajah. Worth a watch! www.youtube.com/watch?v=Y4es...
youtube.com
Dementia starts earlier than you think – here’s what you can do about it
YouTube video by UC Explains
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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
Illustration of two people discussing frontotemporal degeneration treatment options. One is holding a tablet and wearing a stethoscope. The AFTD logo is in the bottom left corner. Text reads, "How is FTD treated? Understanding treatment options for people living with frontotemporal degeneration.The image features a message about FTD (Frontotemporal Degeneration). On the left, a red box with a crossed-out pill bottle indicates "No approved treatment" and states there are no currently approved treatments to slow or stop FTD progression. On the right, a teal box suggests there are ways to manage symptoms and improve quality of life. The AFTD logo is in the bottom left corner.A graphic titled "Treatment is tailored to each person" explains that FTD treatment plans focus on individual symptoms. Three sections describe challenges: "Behavior Changes" with a brain icon, "Communication Challenges" with a speech bubble, and "Movement Symptoms" with a walking figure. The AFTD logo is in the bottom left corner.The image is an informational graphic titled "Support and therapies can help." It contains four sections: Speech Therapy, Physical Therapy, Occupational Therapy, and Caregiver Support. Each section includes a brief description: Speech Therapy improves communication; Physical Therapy aids mobility; Occupational Therapy assists with daily activities; Caregiver Support provides education and emotional help. The AFTD logo is in the bottom left corner.
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FRONTIER Research Group @frontier-usyd.bsky.social · 24/06/2026
A very worthy watch: the Australian Dementia Research Forum (ADRF) 2026 community lecture. www.youtube.com/watch?v=bS9E...
youtube.com
FREE COMMUNITY LECTURE ADRF2026 - "Act Now for Dementia and Healthy Brains'
YouTube video by Australian Dementia Network
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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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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...
Woman's headshot while she wears a blazer in front of a blurred castle
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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
@ppaphasiaawareness.bsky.social @brainandmindcentre.bsky.social @utas.edu.au @sydney.edu.au
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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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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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FRONTIER Research Group @frontier-usyd.bsky.social · 29/01/2026
It's an incredible achievement! Please pass on our congratulations to Henry!
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FRONTIER Research Group @frontier-usyd.bsky.social · 21/01/2026
New paper by @samuelwarren.bsky.social and colleagues, Modeling contributions of cognition and apathy to functional impairment in younger-onset dementia doi.org/10.1002/dad2... @alzdemjournals.bsky.social @muireannirish.bsky.social @brainandmindcentre.bsky.social @sydney.edu.au #endFTD
doi.org
Modeling contributions of cognition and apathy to functional impairment in younger‐onset dementia
INTRODUCTION Overlaps in symptom presentation limits the capacity to predict functional impairment and future care needs in younger-onset dementia syndromes. METHODS A general additive model (GAM)...
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FRONTIER Research Group @frontier-usyd.bsky.social · 21/01/2026
New paper by @lauradewitte.bsky.social & Candy Cheung Understanding the multifaceted nature of quality of life in dementia using a transdiagnostic network analysis approach doi.org/10.1080/1360... @muireannirish.bsky.social @tandfresearch.bsky.social @brainandmindcentre.bsky.social @sydney.edu.au
doi.org
Understanding the multifaceted nature of quality of life in dementia using a transdiagnostic network analysis approach
Efforts to improve quality of life (QOL) in dementia depend on its accurate conceptualization and assessment. We employed a data-driven network approach to examine the structure of relationships be...
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FRONTIER Research Group @frontier-usyd.bsky.social · 04/01/2026
Well done!
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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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FRONTIER Research Group @frontier-usyd.bsky.social · 17/12/2025
Our 2025 group photo. Big smiles, big plans for the year ahead. #frontotemporaldementia #primaryprogressiveaphasia #ftd #ftld #ppa #endFTD @brainandmindcentre.bsky.social @sydney.edu.au
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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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FRONTIER Research Group @frontier-usyd.bsky.social · 03/12/2025
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
dementia.com.au
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.
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FRONTIER Research Group @frontier-usyd.bsky.social · 30/11/2025
This is a great initiative!
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FRONTIER Research Group @frontier-usyd.bsky.social · 26/11/2025
What a great initiative!
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