Workshop on Defining the FTD & ALS Spectrum

September 18, 2024 8:30AM-1:30PM Amsterdam

(preceding ISFTD September 19-21, 2024)

Corey McMillan, Michael Benatar, & John van Swieten

There is increasing conceptual recognition that frontotemporal degeneration (FTD) and amyotrophic lateral sclerosis (ALS) represent the extreme ends of a complex clinical, pathological, and genetic spectrum.  However, despite the concept of an ALS-FTD spectrum, in practice there remains minimal interaction and consensus between the FTD and ALS research communities. This lack of interaction risks duplicity or inconsistencies in our definitions of the biology and clinical concepts of ALS and/or FTD.  Moreover, TDP-43 which commonly brings together ALS and FTD is also associated with aging and non-CNS disorders which challenge concepts from within our communities. We therefore will host a half-day workshop preceding the ISFTD 2024 meeting to learn from multiple perspectives both within the FTD and ALS communities and beyond. The program includes:


Strategies to Establish a Framework and Improve Nomenclature to Bridge Gaps in FTD & ALS Spectrum. Michael Benatar and Corey McMillan (8:45-9:00AM)


Multi-disease Perspectives from Adjacent Disorders

  • Clinical & Pathological Perspectives of LATE TDP-43: David Wolk (9:00-9:15AM)
  • Cognition & Behavior in PMA & PLS: Michael van Es (9:15-9:30AM)
  • Molecular & Clinical Lessons from VCP
    • Molecular: Eddie Lee (9:30-9:45AM)
    • Clinical: Lindsay Alfano (9:45-10:00AM)


Discussion: 10-10:15AM


Break: 10:15-10:45AM


Lessons from Less Frequent Phenotypic Variants

  • Motor & Cognitive Features of Language Disorders in ALS: Niall Pender (10:45-11:00AM)
  • Cognition & Behavior in SOD1 ALS: Monica Consonni (11:00-11:15AM)
  • Neuropsychiatric & Psychosis Features of ALS and FTD: Ted Huey (11:15-11:30AM)

Discussion: 11:30AM-11:45AM


Biomarkers of Biology Across Phenotypic Spectrums of ALS & FTD

  • Biofluid biomarkers of tau and TDP-43: Kathryn Cousins (11:45AM-12:00PM)
  • Emerging TDP-43 biomarkers: Len Petrucelli (12:00-12:15PM)


Discussion: 12:15-12:30PM


Joint Lunch with Frontotemporal Prevention Initiative (12:30-1:30PM)


Sponsorship: This workshop is generously supported in part by donations from the Association for Frontotemporal Degeneration (AFTD), PassageBio. Motor Neurone Disease Association (MNDA), and private donors.


Free Registration: