On April 25th, members of the FTDTalk team attended the FTD Family Meet-Up hosted by Cure MAPT FTD in London. This special
event brought together individuals and families affected by MAPT-associated frontotemporal dementia (FTD), offering a unique opportunity to connect, share experiences, and hear from some of the leading experts in FTD research.
Who is Cure MAPT FTD
Cure MAPT FTD is a global network of families affected by mutations in the MAPT gene, with members based in Canada, England, France, New Zealand, and the United States. Drawing on their own lived experience, the group is dedicated to raising awareness, supporting research, and
helping to drive progress toward a future free from the impact of MAPT-related FTD.
The meet-up featured a series of informal talks and open discussions, giving families a welcome opportunity to speak directly with researchers and clinicians about the current state of MAPT research and future directions.
Dr Arabella Bouzigues, central coordinator of the GENetic FTD Initiative (GENFI), gave an update on the study’s progress. She spoke about ongoing efforts to develop a platform trial specifically for MAPT carriers, and outlined upcoming changes in GENFI aimed at supporting trial readiness and international collaboration.
Nikki Zimmerman from Rare Dementia Support (RDS) also spoke at the event, providing an overview of the service at UCL and its continued work to support the development of similar services internationally.
Finally Linde Jacobs, a member of the Cure MAPT FTD team, shared her personal story and spoke about the community’s important work to support families and raise awareness. Her reflections highlighted the value of connection and the shared drive to move research forward.
The event was both informative and reflective—offering families the chance to hear about the latest developments, ask questions, and feel part of a wider community working toward a common goal. We are incredibly grateful to Cure MAPT FTD for hosting such a thoughtful event, and to everyone who continues to contribute to this important work.
