Community-Led &
Collaborative Research
ETL initiates, supports, and collaborates on projects addressing questions important to people and families affected by genetic ALS and FTD. These projects bring community perspectives together with relevant scientific and professional expertise.
ETL Research Posters and Presentations
Poster Presented at the 2024 ALS MND Symposium
Poster presented at the 2024 ISFTD meeting examining possible relationship risks associated with informant questionnaires in research involving people without manifest FTD.
Poster from 2023 ALS MND Symposium.
Further Results from Survey
A video explainer of a poster presented at the 2022 ALS MND Symposium on original C9orf72 estimates by Jean Swidler
Results of a survey conducted of our community of the desire for presymptomatic treatment, presented at the 2022 Allied Professional Forum.
2026 Gordon Conference on FTD Poster
2025 ALS MND Symposium Poster
Research Contributions by ETL Community Members
Wanda Smith Presented this poster on GRN Communitty Activation at the 2024 ISFTD Meeting
Wanda Smith Presented this poster on GRN Communitty Activation at the 2024 ISFTD Meeting