Earlier this month, our researchers and collaborators from across the globe gathered in Munich for the annual GENetic Frontotemporal dementia Initiative (GENFI) meeting, our annual all-site in-person GENFI Meeting.
Day One: Science, Coffee, and Collaborative Momentum
The conference kicked off on Thursday with a warm welcome from our hosts from the Munich GENFI site, Johannes Levin, Sonja Schönecker and Lena Marth.
Jonathan Rohrer, along with Phoebe Foster, Sophie Farley, and Eve Ferry-Bolder, opened the scientific agenda with a comprehensive update on recruitment, data freezes, and recent publications highlighting our initiative’s progress and the growing impact of the GENFI dataset across more than 90 publications. We also heard from new GENFI sites in Marseille and Rouen – welcome to the team!
One of the highlights of the morning was a session on clinical, cognitive, and digital projects chaired by Lena Marth, featuring updates on digital tools (IGNITE app – Rhian Convery; novel eye-tracking task – Liset de Boer), clinical projects (autonomic symptoms in genetic FTD – Sonja Schönecker; survival in genetic FTD – Barbara Borroni and Arabella Bouzigues), and cognitive research (network analyses – Lize Jiskoot; apathy measurement using the b-DAS – Sophie Farley; cognitive impairment in young C9orf72 carriers – Phoebe Foster).
The afternoon session featured Julie de Houwer chairing an in-depth session on biomarker and genetics projects that covered a range of topics including TMEM106B’s role in GRN disease (Entrico Premi), a comprehensive genomics and epigenomics update (Mario Masellis), and Beta-synuclein levels in the GENFI cohort (Markus Otto).
In the afternoon, Laura Göschel chaired the imaging session, which featured longitudinal analyses of imaging data from Abbe Ullgren, Elena Rodriguez-Vieitez, and Maurice Pasternak.
To close the scientific program, Sonja Schönecker led an exciting update on therapeutic approaches, with Dieter Edbauer introducing early development work on a C9 vaccine, the first of its receive approval to continue forward at the end of the pre-trial phase.
The day ended in true Bavarian style with drinks and dinner at the historic Hofbräuhaus, generously sponsored by the Bluefield Project.
Munich Principal Investigator Johannes Levin raising a toast – Prost!
Day two: The next stage of our research
Friday’s agenda was dedicated to GENFI investigators only, and focused on planning, working groups, and future direction.
Jonathan Rohrer, Amelia Blesius, Eva Larsen, and Eve Ferry-Bolder, opened with an update on GENFI 3, followed by discussions on GENFI 4 ALL, the next generation of GENFI featuring a digital platform and a GENFI-ALS branch as well.
Working group updates covered a broad range of themes:
- Digital tools (Rhian Convery, Jackie Poos)
- Language and cognition (Rose Bruffaerts, Rosie Coppieters, Lize Jiskoot)
- Clinical genetics (Caroline Graff, Gabriel Miltenberger Miltényi)
- Diversity in research participation (Jackie Poos, Carmela Tartaglia)
Previously GENFI had only been offered to participants 18 and older, but Elizabeth Finger’s new projected called GENFI-NeuroDev is now open and recruiting participants under 18 to participate in limited GENFI battery (with parental permission). The Trials and Therapies Working Group featured exciting updates several promising treatments in trial for the GRN gene and more in the pipeline for c9orf72, as well as plans for a MAPT platform trial in the future.
Finally, one of the most impactful parts of the meeting is always hearing from our GENFI participants via our Participant Engagement Board, chaired by Sophie Goldsmith and Phoebe Foster. Thank you as always to our participants for engaging in our research, without you we would not be here!
As the meeting wrapped up over lunch, there was a clear sense of momentum and shared purpose. We left Munich energised, collaborative as ever, and ready for the next phase of discovery.
The team then headed back to London, ready to continue our research!
Members of the FTD_Talk team
Eva Larsen, on behalf of the FTD Talk Team.
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