FRONTIER Research Group @frontier-usyd.bsky.social · 21/09/2026@brainandmindcentre.bsky.social @sydney.edu.au 000
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 #endFTDyoutu.beLiving with primary progressive aphasia | Kathy’s storyYouTube video by FRONTIER FTD Research Group 101
FRONTIER Research Group @frontier-usyd.bsky.social · 14/09/2026New 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 #endFTDlink.springer.comBehavioural 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... 010
FRONTIER Research Group @frontier-usyd.bsky.social · 14/09/2026#DementiaAwarenessMonth #Dementia #endFTD #YoungerOnsetDementia @brainandmindcentre.bsky.social @newsroomusyd.bsky.social @sydney.edu.au 000
FRONTIER Research Group @frontier-usyd.bsky.social · 14/09/2026Changes 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-XowXVqK1Myoutube.comUnderstanding motivation in frontotemporal dementia | Prof Muireann IrishYouTube video by FRONTIER FTD Research Group 100
FRONTIER Research Group @frontier-usyd.bsky.social · 01/09/2026#DementiaAwarenessMonth #Dementia #endFTD #YoungerOnsetDementia @brainandmindcentre.bsky.social @newsroomusyd.bsky.social @sydney.edu.au 000
FRONTIER Research Group @frontier-usyd.bsky.social · 01/09/2026For 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-bxLIyoutu.beImproving Dementia Diagnosis Through Research and Clinical InnovationYouTube video by FRONTIER FTD Research Group 110
Reposted by FRONTIER Research GroupBrain Support Network @brainsupportnet.bsky.social · 25/08/2026Automated Speech Analysis to Identify Clinical, Anatomical, and Pathological Variants of Primary Progressive Aphasia ( #PPA ) Read at JAMA: jamanetwork.com/journals/jam... 121
FRONTIER Research Group @frontier-usyd.bsky.social · 25/08/2026New 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 #endFTDlink.springer.comLanguage impairments in behavioural variant frontotemporal dementia: a comparative study with semantic dementia - Journal of NeurologyIntroduction 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... 030
FRONTIER Research Group @frontier-usyd.bsky.social · 24/08/2026Are 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/... #endFTDtheguardian.comAre you an Australian living with dementia? We’d like to hear from youTell us about your experience and what supports and awareness are needed for our new series 010
Reposted by FRONTIER Research GroupThe 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 022
FRONTIER Research Group @frontier-usyd.bsky.social · 11/08/2026Congratulations 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... #endFTDcity2surf26.grassrootz.comFRONTIER in 2026 Voltaren City2SurfFRONTIER, 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... 000
FRONTIER Research Group @frontier-usyd.bsky.social · 30/07/2026On 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 100
FRONTIER Research Group @frontier-usyd.bsky.social · 10/07/2026www.smh.com.au/national/nsw... @brainandmindcentre.bsky.social @sydney.edu.au #endFTDsmh.com.auCharlie’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. 000
FRONTIER Research Group @frontier-usyd.bsky.social · 10/07/2026A 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/4eV6ltrinstagram.comMadison 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 ... 130
Reposted by FRONTIER Research GroupFTD Disorders Registry @ftdregistry.bsky.social · 09/07/2026You 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 031
Reposted by FRONTIER Research GroupMaya Henry @mayalhenry.bsky.social · 09/07/2026The 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.socialspeechtherapyppa.comICPPA Conference registration | Speech Therapy PPAConference registration for the International Conference on Primary Progressive Aphasia (ICPPA) 2026 in London, UK. July 16-17th, 2026. 073
Reposted by FRONTIER Research GroupPenn FTD Center @pennftdc.bsky.social · 30/06/2026The 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! 011
Reposted by FRONTIER Research GroupABI 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... 011
Reposted by FRONTIER Research GroupDementia Researcher @dementiaresearcher.bsky.social · 06/07/2026FTD 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... 051
FRONTIER Research Group @frontier-usyd.bsky.social · 06/07/2026Trained 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.socialsydney-informatics-hub.github.ioACE-III online dementia screening tool | FRONTIER ResearchThis 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... 010
FRONTIER Research Group @frontier-usyd.bsky.social · 06/07/2026New 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.ioACE-III online dementia screening tool | FRONTIER ResearchThis 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... 120
FRONTIER Research Group @frontier-usyd.bsky.social · 01/07/2026This link provides free access to the paper: www.tandfonline.com/eprint/Z3UXS...tandfonline.comUnderstanding the multifaceted nature of quality of life in dementia using a transdiagnostic network analysis approachEfforts 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... 010
FRONTIER Research Group @frontier-usyd.bsky.social · 25/06/2026New 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.socialdoi.org 010
FRONTIER Research Group @frontier-usyd.bsky.social · 25/06/2026This is a great explanation of dementia by Dr Ananthan Ambikairajah. Worth a watch! www.youtube.com/watch?v=Y4es...youtube.comDementia starts earlier than you think – here’s what you can do about itYouTube video by UC Explains 010
Reposted by FRONTIER Research GroupThe Association For Frontotemporal Degeneration @theaftd.bsky.social · 24/06/2026While 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 011
FRONTIER Research Group @frontier-usyd.bsky.social · 24/06/2026A very worthy watch: the Australian Dementia Research Forum (ADRF) 2026 community lecture. www.youtube.com/watch?v=bS9E...youtube.comFREE COMMUNITY LECTURE ADRF2026 - "Act Now for Dementia and Healthy Brains'YouTube video by Australian Dementia Network 010
FRONTIER Research Group @frontier-usyd.bsky.social · 20/05/2026Curious 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.comThe FRONTIER Frontotemporal Dementia Research GroupYouTube video by FRONTIER FTD Research Group 020
Reposted by FRONTIER Research GroupBrain 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... 062
Reposted by FRONTIER Research Groupneurologicpodcast.bsky.social @neurologicpodcast.bsky.social · 09/01/2026Start 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... 0104
FRONTIER Research Group @frontier-usyd.bsky.social · 16/03/2026Have 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 097
FRONTIER Research Group @frontier-usyd.bsky.social · 27/02/2026@ppaphasiaawareness.bsky.social @brainandmindcentre.bsky.social @utas.edu.au @sydney.edu.au 000
FRONTIER Research Group @frontier-usyd.bsky.social · 27/02/2026Primary 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... 141
FRONTIER Research Group @frontier-usyd.bsky.social · 27/02/2026YOD‑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 #dementiaevents.humanitix.comLet us Grow: Life, Creativity and ConnectionAttend 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 000
FRONTIER Research Group @frontier-usyd.bsky.social · 26/02/2026We’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.socialgo.sydney.edu.auFinding Voice Through Loss: how a gift is empowering dementia careA 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 ... 072
Reposted by FRONTIER Research GroupFTD Disorders Registry @ftdregistry.bsky.social · 18/02/2026Some 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 011
FRONTIER Research Group @frontier-usyd.bsky.social · 19/02/2026Professor 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 #endFTDftdtoolkit.orgFTDToolkitA novel online platform to monitor symptom progression in Frontotemporal Dementia and carers’ wellbeing 022
Reposted by FRONTIER Research GroupABI 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... 011
FRONTIER Research Group @frontier-usyd.bsky.social · 30/01/2026Congratulations 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.auSnowy Valleys Council 2026 Australia Day Awards AnnouncedThe 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... 021
FRONTIER Research Group @frontier-usyd.bsky.social · 29/01/2026It's an incredible achievement! Please pass on our congratulations to Henry! 010
FRONTIER Research Group @frontier-usyd.bsky.social · 21/01/2026New 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 #endFTDdoi.orgModeling contributions of cognition and apathy to functional impairment in younger‐onset dementiaINTRODUCTION 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)... 062
FRONTIER Research Group @frontier-usyd.bsky.social · 21/01/2026New 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.audoi.orgUnderstanding the multifaceted nature of quality of life in dementia using a transdiagnostic network analysis approachEfforts 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... 151
Reposted by FRONTIER Research GroupThe Association For Frontotemporal Degeneration @theaftd.bsky.social · 19/12/2025GemVax & 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 041
FRONTIER Research Group @frontier-usyd.bsky.social · 17/12/2025Our 2025 group photo. Big smiles, big plans for the year ahead. #frontotemporaldementia #primaryprogressiveaphasia #ftd #ftld #ppa #endFTD @brainandmindcentre.bsky.social @sydney.edu.au 020
Reposted by FRONTIER Research GroupABI Communication Lab 🧠 🌱 💬 @abicommlab.bsky.social · 10/12/2025The #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 011
Reposted by FRONTIER Research GroupThe PSP Association @pspassociation.bsky.social · 09/12/2025The 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 032
FRONTIER Research Group @frontier-usyd.bsky.social · 03/12/2025We’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... #endFTDdementia.com.auIrene and Lottie find the right support at a challenging timeIrene and Lottie find essential support and resources through Carer Conversations to navigate the challenges of caring for a loved one with Frontotemporal Dementia. 020