A Week of Awareness…


Grassroots volunteers and FTD experts from around the globe joined AFTD to mark World FTD Awareness Week 2020 (Sept. 27-Oct. 4) with a wide range of activities designed to raise awareness, share information, and raise funds to help hasten a world free of FTD.

The week’s centerpiece was the World FTD Marathon, a series of interactive webinars that highlighted emerging FTD research, caregiving strategies, and perspectives from persons diagnosed, held on Oct. 3.

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!

Also during World FTD Awareness Week, a group of FTD grassroots volunteers launched the #FTDHotShotChallenge. Participants were encouraged to film themselves drinking a shot of hot sauce, then share it on social media to raise FTD awareness and crucial funds to drive AFTD’s work to end this disease. As detailed on page 11, the campaign raised more than $110,000!

With the support of a generous donor, AFTD placed two full-page ads in the New York Times during World FTD Awareness Week, along with ads on nytimes.com and accessible via mobile devices, promoting the #FTDHotShotChallenge.

The ads told the stories of AFTD Volunteers and Hot Shot participants Amanda Dawson, Nicole Petrie and Caroline Dultz, all of whom have loved ones with FTD, as well as Jennifer Lee, who is living with primary progressive aphasia. “I drank a shot of hot sauce, and to be honest I usually can’t even eat Taco Bell because it’s too spicy,” Lee wrote in her Times ad. “I’ll do anything possible to fight this disease, and to leave a legacy for my children.”

Finally, AFTD’s flagship grassroots fundraiser, Food for Thought, kicked off during World FTD Awareness Week. This year saw many more online-only events than in years past, but still raised more than $120,000!

Food for Thought events took place in 21 states, plus Canada. To learn about some of the creative ways members of the AFTD community marked Food for Thought 2020, look at page 10 of the Fall 2020 issue of AFTD News.

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