This June, some of the FTDTalk team attended and spoke at the annual support group day for familial frontotemporal dementia (f-FTD), hosted by the Rare Dementia Support (RDS) team. The event brought together families affected by genetic forms of FTD, offering both a space to connect and the chance to hear about the latest research developments.
Updates on FTD research
The day began with an update from Amelia Blesius, Study Coordinator for the UCL GENFI team, who spoke about digital health technologies and future plans for the study. Amelia shared how tools like Fitbits, accelerometers and the iPad-based assessment Ignite are already being used in GENFI, and introduced new digital measures being explored, including the Oura ring. Amelia also highlighted some pilot data from her own research, which focuses on heart rate variability across disease stages in FTD. Highlighting the importance of digital tools in providing passive and more accessible monitoring.
Sophie Farley, one of the GENFI Research Assistants, followed with an update on current clinical trials in genetic FTD. She spoke about trials available to people with GRN or C9orf72 mutations, and the importance of international collaboration in advancing treatment research. This includes efforts to build a “trial-ready cohort” for future platform trials, particularly in rare mutation groups. She also highlighted the crucial role of participant advocacy groups – such as CURE-MAPT and CURE-GRN – in supporting these efforts, from raising awareness to helping recruit participants and shape trial design. Farley concluded by sharing promising early results from the FOXY trial, which found that intranasal oxytocin may help reduce apathy in people with FTD (Coleman, 2025).
The morning was topped off with a Q&A session with Professor Jon Rohrer.
Following lunch, Ollie Hayes, a psychologist from the RDS team, gave an update on Improving Wellbeing in At-Risk Familial FTD (IWARF) study. This is an online intervention study designed to provide information and support to people associated with familial Alzheimer’s disease or familial FTD, to help them live well. Ollie explained how the programme has been reshaped based on feedback from participants over time. Thanks to their input, the programme now includes more user-friendly tools and practical strategies that people have found genuinely helpful in their daily lives. To hear more about the IWARF study, contact: contact@raredementiasupport.org
Updates on the RDS
Finally, Nikki Zimmermann gave an update on the RDS services, which now support over 8,000 members across seven different rare dementia groups. She spoke about the wide range of support now available, including the Virtual Support Clinic for one-to-one and family sessions, monthly peer support groups, and focus groups to help ensure that patient and public involvement (PPI) remains aligned with ongoing research.
She also spoke about plans for the upcoming RDS Centre, opening in early 2026 – a space designed to offer information, support, and a welcoming environment for members before and after research visits. You can find out more about their research and ongoing work through their website or their Instagram.
Closing remarks
It was a brilliant day full of engaging talks, meaningful conversations and inspiring contributions from across the community. Events like this remind us how essential connection and collaboration are in both research and support.
Sophie Farley on behalf of the FTD Talk team.
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