World FTD Awareness Week
During the week of October 4-11, 2015, countries around the globe observed the first World FTD Awareness Week. The event built on the foundation of productive discussion and collaboration established at the 9th International Conference on Frontotemporal Dementias, held in October 2014 in Vancouver, British Columbia, Canada.
World FTD Awareness Week activities and events were planned by more than 10 countries, including: Australia, Canada, France, Germany, India, Italy, The Netherlands, Spain, Switzerland, United Kingdom, and the United States of America. From conferences in Australia and The Netherlands, to a concert and art gallery in Spain, to a citywide proclamation in Canada, constituents around the world made their voices heard in the fight against FTD.
United States of America Kick-off Event
AFTD hosted the kick-off event, at the World Trade Center on Thursday, October 1st, for the United States of America’s participation in 2015 World FTD Awareness Week. These videos were some of those which played during the evening and helped underscore the importance of AFTD’s mission: to improve the quality of life of people affected by FTD and drive research to a cure.
Events from across the USA that were open to the public may be found via the links to AFTD’s In Your Region pages: New England, Middle Atlantic, South Atlantic, Midwest, South Central, Northwest, and Southwest.
International events are listed below, grouped by host country:
- The Australian FTD Association had several events planned for the week including:
- The inaugural Asia Pacific FTD/MND Scientific meeting (see program and other materials at https://www.neura.edu.au/forefront/apfm)
- The launch of a documentary film which tells the story of a Melbourne family affected by young onset bvFTD.
- Food for Thought and other fund raising events coordinated by various caregiving groups’ members from Australia.
- National radio program spots during which health professional partners can talk about FTD and help raise public awareness.
- Promotion of World FTD Awareness Week events nationally by Alzheimer’s Australia through their newsletters and social media channels.
- Additional details about events in Australia are available at: www.theaftd.org.au
- Events and activities throughout Canada included:
- Ottawa Mayor Jim Watson declared the city’s observance of World FTD Awareness Week.
- The local Alzheimer Society in Ottawa and Renfrew County planned an event called “FTD Food for Thought Cafe.”
- Monday, October 5th
- The first FTD Day, co-hosted by the French National Reference Center for Rare Dementias and the non-profit organization France-DFT, took place at the Institute of Memory and Alzheimer Disease (IM2A) and at the Brain and Spine Institute (ICM), in the Pitié-Salpêtrière Hospital in Paris. Lectures and workshops took place from 9:45 a.m. to 4:00 p.m. Click here for the day’s program.
- Thursday and Friday, October 8th and 9th
- The Lille–Bailleul Memory Center hosted a two-day conference, which focused on promoting clinical research, particularly for early-onset dementia.
- The websites www.deutsche-alzheimer.de and www.frontotemporale-demenz.de worked to build momentum and spread awareness by opening the week with a press release. Then, each day during World FTD Awareness Week, organizers published a story here about living with FTD.
- Wednesday, October 7th
- A press conference was organized by The Italian Association for Frontotemporal Dementias (AIMFT). The organization’s website is: www.frontotemporale.net/wordpress/
- Saturday, October 10th
- The Netherlands held its second nation-wide public day of FTD recognition. The 2015 program included various topics and speakers from experts in the FTD field. This year more time was set aside to allow attendees to exchange experiences with each other, and caregivers shared their stories. More information is available at: https://www.ftdlotgenoten.nl/index.php/nieuws/291-publieksdag-10-oktober-2015
- The Asociación de Demencia Frontotemporal (ADEF) applied to Spanish Authorities in various cities of Spain to declare October 4-11, 2015 World FTD Awareness Week. ADEF also applied to the Spanish Football Federation to support FTD, asking for the federation to recognize World FTD Awareness Week. Some specific events are listed:
- Sunday, October 4th
Caregivers and experts gathered at the Hotel Paseo del Arte to talk about their experiences with relatives suffering FTD. Government officials were invited to attend.
There was a concert that included music from Maurice Ravel, who suffered with FTD for many years before passing away in December 1937
- Monday, October 5th
- Exhibition of paintings and sculptures, from different artists, and some of them will be from Vicente Llorens Poy who died in Villarreal, Castellón, in 2014, who suffered with FTD.
- Tuesday, October 6th
- Auction of paintings and sculptures to raise funds for ADEF.
- Sunday, October 4th
The United Kingdom
- The FTDSG meets several times a year in the UK and has an annual seminar open to professionals and carers. The organization’s website contains additional information.
AFTD invited all to join the global community by:
- hosting a local Food for Thought event and spreading the social media campaign #endFTD!
- Food for Thought (FFT) is a grassroots campaign initiated by AFTD in 2013. The goal of the campaign, held during World FTD Awareness Week, was to raise funds to fight FTD, while increasing awareness regarding this disease.
- AFTD invited constituents to make use of the materials AFTD has developed, which can be found here, and shared this FTD Public Service Announcement, produced by Discovery Communications.
- AFTD’s World FTD Awareness Week Social Media Kit was designed to encourage and facilitate participation.