Watch the 2020 World FTD Marathon…


The first-ever World FTD Marathon, a day-long series of interactive webinars from around the globe, is now available to view in its entirety online — approximately 17 hours of FTD-focused content presented by persons diagnosed, researchers and current and former FTD caregivers.

World FTD United, an international coalition of FTD-focused groups, organized and facilitated the Marathon. (Be sure to subscribe to their YouTube channel!)

Held October 3, the Marathon highlighted World FTD Awareness Week 2020, and began with a block of presentations emanating from Australia. Experts from the Royal Hospital Melbourne and the University of Sydney’s Brain and Mind Centre shared information on the behavioral and language changes that can occur in FTD, as well as recent research findings. Other Australian sessions focused on grief and loss in FTD, as well as the importance of finding support amidst the caregiving journey.

During the Marathon’s European block, researchers from the Netherlands, Italy, England and Finland shared their insights. Presentations focused on the search for FTD biomarkers, the ways in which COVID-19 has impacted caregivers and persons diagnosed, and the state of international collaboration in FTD research. Twice during the European block, researchers gathered to answer questions from viewers.

The Marathon concluded with content from North, Central, and South Americas, curated by AFTD. The morning session was largely devoted to FTD science, including sessions on FTD genetics and genetic testing as well as advancing research through the ALLFTD network and the FTD Disorders Registry. Adam Boxer, MD, PhD, of the UCSF Memory and Aging Center, presented a session on emerging FTD clinical trials.

The midday sessions were conducted entirely in Spanish. Presenters included Dr. Facundo Manes, an internationally renowned dementia expert and the president-elect of International Society for Frontotemporal Dementias, as well as Dr. Teresa Torralva and Dr. Julian Bustin of the INECO Foundation, a nonprofit organization based in Argentina that supports research into neurological disorders.

Later sessions featured a Q&A with members of the AFTD Persons with FTD Advisory Council, a newly formed group of persons diagnosed that informs AFTD’s work with their firsthand insight. Rita Choula, director of Caregiving at the AARP Public Policy Institute, fused personal and professional observations in a presentation about empowering the FTD caregiver. And a screening of the short film It Is What It Is was followed by a Q&A with its director, Joseph Becker, and three of the FTD care partners featured in it.

Please share the World FTD United YouTube channel with your contacts — and encourage them to subscribe!

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