Evaluation of an educational conference for persons affected by hereditary frontotemporal degeneration and amyotrophic lateral sclerosis

•Resources are lacking for persons at genetic risk for neurodegenerative disease.•Our survey probed the educational needs and demands of the at-risk community.•Findings indicate under-utilization of resources for overlapping genetic conditions.•We found intent to pursue genetic counseling following educational talks.•Participants expressed strong desire to learn about and participate in research.