World FTD Awareness 2017

Many countries, one world, one hope to #EndFTD

Together, we tell – and can change – the story of FTD. From September 24 through October 1, 2017, advocates in ten countries staged events and used social media to convene the third World FTD Awareness Week, seeking to make sure that FTD garners the global response that it deserves. Through work led by a coalition of advocates and advocacy organizations known as World FTD United, in addition to the United States, this year’s event saw Australia, Canada, Colombia, Ecuador, France, Italy, The Netherlands, Spain, and the UK represented! The story of FTD is one that can only be accurately told – and addressed – with contributions from families around the world.

The centerpiece to the U.S. effort was the Association for Frontotemporal Degeneration’s “Think It’s Alzheimer’s? Think Again” campaign, with a sequence of videos created with Discovery Communications. Advocate Katie Brandt and her husband Mike were both 29 when he was diagnosed with FTD. In one video, she powerfully articulates her determination that “FTD will not have the final word in our family’s story.” Actress Martha Madison, ACC/Atlanta Falcons broadcaster Wes Durham, and others also shared on their own family’s journeys. Two full-page ads also ran in the September 24 and October 1 issues of the Sunday New York Times.

A variety of international events also occurred during this week. As a few event examples: The Spanish association for FTD, ADEF Asociación de demencia Frontotemporal, gathered families in front of the Guggenheim Museum in Bilbao to share the message Not all dementias are Alzheimer’s.  In France, the Association France-DFT (Dégénérescences Fronto-Temporales) held a national day for FTD, called the “Journée Française des DFT.”

It’s not too late to start thinking about next year’s World FTD Awareness Week, which will run from Sunday September 23th through Sunday September 30^th, 2018.  The FTD Disorders Registry encourages you to reflect about other ways in which, together, we can make more people aware of FTD, and advance the science to address this disease.