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World FTD Awareness Week 2020 Marathon

World FTD Awareness Week 2020 Marathon


On Saturday, October 3, 2020, presenters from around the globe will mark World FTD Awareness Week by sharing information, resources, and updates on

On Saturday, October 3, 2020, presenters from around the globe will mark World FTD Awareness Week by sharing information, resources, and updates on frontotemporal degeneration (FTD) through an online program. 

While hearing international FTD presentations usually requires traveling to far-away conferences, this year the experts will be brought to the people during the 2020 World FTD Marathon. While COVID-19 prevents meeting in person, caregivers will also be able to connect online with others around the world.

The global event will begin in Australia at 10:00 a.m. AEST (UTC+10) before moving to Europe at 10:00 a.m. CET (UTC+1), and finally, to the Americas at 10:00 a.m. EDT (UTD-10). All sessions are free, and viewers can join the programming in each region at any point throughout the day. Registration is required.

The Americas

The Association of Frontotemporal Degeneration (AFTD) is curating the North, Central, and South American portion of this event, which will run from 10:00 a.m. to 4:00 p.m. Eastern Daylight Time (7 a.m. to 1 p.m. PDT). 

Experts from organizations in Canada, the United States, and Central and South America 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 brought for people and families affected by FTD, and for FTD researchers, and offer reasons for hope. Presenters will be researchers, health professionals, people living with an FTD diagnosis, and caregivers and family members.

At the 10:30 a.m. (EDT) Americas session, viewers can watch FTD Registry Manager Lakecia Vincent, MS, MCHES, present “The FTD Disorders Registry: Every Story Advances the Science.” 




The Marathon kicks off in Australia with both clinical and research experts from Neuropsychiatry, Royal Melbourne Hospital, and FRONTIER, the FTD research clinic at the Brain & Mind Centre, University of Sydney. The presentations will be geared to families living with FTD, carers, and health professionals who want to learn about FTD. Speakers will be available to answer your questions. There will be more than 4 hours of presentations before the baton is passed to colleagues in Europe.


The European program has specialists from Italy, the United Kingdom, and the Netherlands. Presentations will cover the disease, biomarkers, and how to cope with COVID-19 while caring for a loved one. Also, the latest developments in FTD are shared.


Each year World FTD Awareness Week is held near the end of September or in early October. World FTD United organized the first World FTD Awareness Week in 2015. Currently, 15 countries are represented in the coalition: Argentina, Australia, Brazil, Canada, Columbia, France, India, Ireland, Italy, Germany, Spain, Switzerland, The Netherlands, the United Kingdom, and the United States of America.

Although FTD is the most common form of dementia for people under 60, far too few know about the challenges it brings for hundreds of thousands around the world. World FTD Awareness Week hopes to change that by increasing global awareness in order to hasten diagnosis, improve care and support options, foster research into potential treatments, and ultimately find a cure.

Program for the Americas

10:00 a.m. EDT

  • Brief Introductions: ISFTD and AFTD
    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. EDT

  • The FTD Disorders Registry: Every Story Advances the Science 
    Lakecia Vincent, MS, MCHES, Registry Manager

11:00 a.m. EDT

  • Launching LEFFTDS and Advancing ALLFTD: Coming Together to Advance FTD Research
    Nupur Goshal, MD, PhD, Washington University in St. Louis

11:30 a.m. EDT

  • 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. EDT

  • Introduction to FTD Genetics and Genetic Counseling
    Emily Dwosh, MSc, CCGC, The University of British Columbia, Vancouver, Canada

12:30 p.m. EDT

  • Introducción a la Demencia Frontotemporal
    (Introduction to Frontotemporal Dementia, presentation in Spanish)
    Dr. Facundo Manes, President Elect, President Elect International Society for Frontotemporal Dementias

1:00 p.m. EDT

  • Desafíos en tiempos de COVID en pacientes y familias con demencia Frontotemporal en América 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. EDT

  • 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. EDT

  • 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. EDT

  • Living with FTD: Q&A with AFTD’s Persons with FTD Advisory Council
    Matthew Sharp, M.S.S., AFTD Program Manager, facilitator

3 p.m. EDT

  • Empowering the FTD Care Partner: Self-Care and Effective Communication
    Rita B. Choula, M.A., Director of Caregiving, AARP Public Policy Institute

3:30 p.m. EDT

  • "It Is What It Is" Screening and Discussion
    with Film Director Joe Becker, president, Thinkfilm
    Bill, Christopher, Mary Ann, and Michele, care partners featured in the film

4:15 p.m. EDT

  • Program concludes