AFTD partnered with the FTD Disorders Registry to attend the annual American Academy of Neurology meeting April 13-18 in Denver. Will Reiter, Ray Frattone, and Shana Dodge from AFTD joined Carrie Milliard from the FTD Disorders Registry to exhibit and share information about FTD and how both organizations can be a resource for people impacted by FTD.

Thousands of neurologists were in attendance and were able to view a presentation by Dr. Dodge entitled Risk Perception and the Genetic Testing Gap in Frontotemporal Degeneration (FTD): FTD Insights Survey Highlights the Need for Comprehensive Genetic Counseling. In this presentation, Dr. Dodge noted that although FTD has a relatively high genetic component compared to related disorders, genetic counseling and testing are not standard clinical practice in the US.

The FTD Insights Survey, a community-wide survey created by AFTD and the FTD Disorders Registry to better understand the lived experience of FTD, received 1,799 complete responses. Survey respondents noted generally low rates of genetic testing amongst people diagnosed, people with a family history of FTD, and people who perceive themselves to be at risk for developing FTD. Concerningly, a significant number of people who have undergone genetic testing reported not understanding the testing results. Dr. Dodge encouraged the healthcare professionals diagnosing and treating people with FTD to consider genetic counseling to determine if genetic testing is appropriate and ensure people understand their results.

More information on FTD and genetic counseling can be found on AFTD’s website.