On March 19th, the FTDTalk team attended the Frontotemporal Dementia (FTD) Seminar, hosted by the Rare Dementia Support team. The annual event is a valuable opportunity for family members to share their experiences and for researchers to present their latest findings.
Connecting with the Community
The seminar provides a fantastic platform to engage with those affected by FTD, to reconnect with familiar faces from our research and past events, and to exchange updates on advancements in research, care, and support.
One of the key presentations highlighted the Open Network for Frontotemporal Dementia Inflammation Research (ON-FIRE)—a new UK-wide study aimed at identifying clinically relevant inflammatory profiles in individuals with FTD. The research also seeks to understand the genetic and environmental factors influencing these patterns. With multiple centres across the UK involved in data collection, this study represents an exciting step forward in FTD research. If you are interested in learning more, see here.
Genetic Testing & Lifestyle Factors
After the lunch break, Professor Jon Rohrer provided updates on genetic screening, predictive testing, and reproductive options for those with a family history of FTD. If you are seeking more information or guidance on genetic testing, we have valuable support and resources available here.
Professor Rohrer also explored lifestyle factors related to non-genetic FTD. While research in this area remains limited, several studies have suggested that traumatic brain injuries are associated with an increased risk of disease (Deutsch et al., 2014; Kalkonde et al., 2012; Rosso et al., 2003) . Additionally, some studies have shown a potential link between autoimmune disorders and certain forms of FTD, underscoring the need for further investigation (Miller, 2016;Rosso et al., 2003).
Encouragingly, research also suggests that maintaining an active lifestyle —both physically and cognitively— could be beneficial in managing FTD symptoms (Casaletto et al., 2020) These findings highlight the importance of continued research and the proactive role individuals can take in promoting brain health.
Research Updates & Closing Remarks
The day concluded with an overview of ongoing studies led by the Rare Dementia Support team, presented by Ollie Hayes. Among these was the Improving Wellbeing Associated with Rare Familial dementias (IWARF) study. This is an online intervention designed to provide information and support to people associated with familial Alzheimer’s disease or familial FTD, to help them to live well. If you are interested in participating in the study, please contact contact@raredementiasupport.org
We are deeply grateful to all the speakers who shared their expertise and introduced new studies, as well as to the many attendees whose presence and engagement make these events so meaningful. Your support is instrumental in driving forward research, care, and awareness. Thank you!
