Amanda Gleixner, PhD, attended the Amyotrophic Lateral Sclerosis (ALS) Nexus, held in Dallas, TX in August. The ALS Nexus is an annual conference hosted by the ALS Association which brings together researchers, clinicians, people with ALS, caregivers, advocates, and industry collaborators to collaborate and accelerate progress toward making ALS a livable disease and eventually finding a cure.

FTD lies at the cross-section of numerous neurodegenerative disorders, including ALS. For example, a variant in the C9orf72 gene is the most common cause of both genetic FTD and ALS, and both FTD and ALS can present within the same family and even in the same person. Further, apparently sporadic cases of FTD-ALS can occur. Additionally, build-up of abnormal TDP-43 has been observed in FTD and ALS patient samples. AFTD recognizes that there is opportunity to learn from related fields and accelerate the pace of FTD research and drug development. Thus, AFTD has been engaging with researchers and community members to promote collaboration between FTD & ALS experts (you can read an earlier Advancing Hope article to learn more).

At the ALS Nexus, Dr. Gleixner presented data from the FTD Disorders Registry on the diagnostic journey of people impacted by FTD-ALS and compared and contrasted it to the experiences of people with Corticobasal Degeneration and Progressive Supranuclear Palsy. Learn more about FTD-ALS and related resources on AFTD’s website.