GENFI Participant Webinar: May 2026
Returning for a third year, our annual GENFI Participant Webinar series highlighted the diverse and innovative topics currently being investigated by Genetic Frontotemporal Dementia Initiative (GENFI) researchers – ranging from advanced brain imaging to the complex world of FTD genetics.
This year’s session also delved into exciting future plans for the study to expand into Amyotrophic Lateral Sclerosis (ALS) research, alongside providing an important look at the evolving landscape of genetic FTD clinical trials.
Finally, we were privileged to welcome some of the global research networks and international patient advocacy organisations, working hard to support our participant community.
How do brain scans help us track and fight dementia? Eva Cullen discussed how different types of neuroimaging and brain scans are used within the GENFI study to better understand structural changes and map disease progression across genetic forms of FTD.
Professor Rebekah Ahmed provided an update on the FTD research taking place across Australian DINAD and FRONTIER networks. She shares their current research priorities, key diagnostic tool outputs, active clinical trials, and the important support pathways available to families and caregivers.
Why do some individuals carrying the same genetic mutation experience FTD differently? Marijne Vandebergh discussed the interesting science of genetic modifiers – providing insights into why some gene variations can alter age of onset, severity, and the overall story of genetic FTD.
Frontotemporal dementia and Amyotrophic Lateral Sclerosis (ALS/Motor Neuron Disease) share overlapping genetic causes. Luna Nordenstroem presented GENFI’s new initiative to expand the study to include ALS patients – building a broader framework to better understand both conditions.
Sophie Farley provided a rundown of the current clinical trials space for genetic frontotemporal dementia, covering both active therapeutic interventions and upcoming pipelines.
Finally, Wanda Smith highlighted the important work of their patient advocacy organisation, CureGRN. CureGRN is dedicated to raising awareness, fostering global collaboration, and driving research to find effective treatments and prevention strategies for FTD caused by the progranulin gene mutation.