World FTD Marathon 2020


To mark World FTD Awareness Week 2020, AFTD and its fellow members of the World FTD United coalition will spread FTD awareness and information across the globe with the first-ever World FTD Marathon.

AFTD is curating the North, Central and South American section of the Marathon, which will be held Saturday, October 3.

Scroll down to see the full slate of presenters for this section, including leading researchers, persons diagnosed and others who will provide the latest information on FTD, research, and support to address this disease. They will reflect on the challenges that 2020 and the COVID-19 pandemic have presented for people and families affected by FTD, as well as for researchers, and will also offer reasons for hope.

Visit the World FTD United website to learn more about the full World FTD Marathon schedule. And click the link below to register for the North, Central and South American section!

Register by clicking here!


 10:00 a.m. (all times EST)
Brief Introductions


Rosa Rademakers, PhD
President, ISFTD
Helen-Ann Comstock
Founder, AFTD, and Past Chair, World FTD United
Frontotemporal Degeneration: Subtypes and Reasons for Hope Murray Grossman, MD, EdD


Director, Penn FTD Center

 10:30 a.m.
The FTD Disorders Registry: Every Story Advances the Science Lakecia Vincent, MS, MCHES
Registry Manager
 11:00 a.m.
Launching LEFFTDS and Advancing ALLFTD: Coming Together to Advance FTD Research Nupur Ghoshal, MD, PhD
Washington University of St. Louis
 11:30 a.m.
Entering the Era of FTD Clinical Trials Susan L-J Dickinson, MSGC
CEO, The Association for Frontotemporal Degeneration 

Adam Boxer, MD, PhD
UCSF Memory and Aging Center

 12:00 p.m.
Introduction to FTD Genetics and Genetic Testing  Emily Dwosh, MSc, CCGC
The University of British Columbia
Vancouver, Canada
 12:30 p.m.
Introducción a la Demencia Frontotemporal
(Introduction to Frontotemporal Dementia, presentation in Spanish)
Dr. Facundo Manes, President Elect, International Society for Frontotemporal Dementias
 1:00 p.m.
Desafíos en tiempos de COVID en pacientes y familias con demencia Frontotemporal en America Latina
(Challenges of COVID-19 and FTD in Latin America, presentation in Spanish)
Teresa Torralva, Frontotemporal Dementia Clinic, INECO Foundation. Argentina
 1:30 p.m.
Manejo de los trastornos conductuales en la demencia Frontotemporal
(Management of behavioral aspects of FTD, presentation in Spanish)
Julian Bustin, Neuropsychiatry and Memory Clinic. INECO Foundation. Argentina
 2:00 p.m.
FTD, Long-Term Care and the Impact of COVID-19 Carmela Tartaglia, M.D., FRCPC


Cognitive Neurologist, Memory Clinic — Toronto Western Hospital
Director Memory Clinical Trials Unit

 2:30 p.m.
Living with FTD: Q&A with AFTD’s Persons with FTD Advisory Council Matthew Sharp, M.S.S., AFTD Program Manager, facilitator
 3:00 p.m.
Empowering the FTD Care Partner: Self-Care and Effective Communication Rita B. Choula, M.A.

Director of Caregiving
AARP Policy Institute

 3:30 p.m.
It Is What It Is: Screening and Discussion with Director Joseph Becker  Joseph Becker
President, Thinkfilm 

Along with Bill, Christopher, Mary Ann, and Michele, the care partners featured in the film

 4:15 p.m.
Program concludes.


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