World FTD Awareness Week


September 25 through October 2, 2016

Many countries, one world, one hope to #EndFTD

netherlands-fatherGlobal collaboration is the best way to improve quality of life for people facing FTD — and to drive treatment toward a cure. Together, we can bring hope for a future in which FTD is effectively diagnosed, treated, cured, and even prevented.

World FTD Awareness Week 2016 was a huge success. Across the country and the world, people whose lives have been touched by FTD held Food for Thought events, where they served food to their friends, told their stories and helped to raise awareness of FTD, one person at a time. These events also provided a great opportunity to raise funds to support the fight against FTD.

Others raised awareness by:

– Screening an FTD-related film, such as It Is What It Is or Looks Like Laury, Sounds Like Laury.
– Hosting gatherings at local restaurants.
– Hosting conferences and other cultural events.
– Taking part via social media!

Check back here frequently, to see new events around the world! 

World FTD Awareness Week — Calendar of Events

france9/25/2016 through 10/9/2016Food for Thought! In 35 states, plus Canada the U.K, Food for Thought events helped to raise awareness and funds to support our mission to #endFTD.

9/25/2016 — With support from a generous donor, a new AFTD awareness ad (pdf) appeared in the main section of the Sunday New York Times.

9/26/2016 — On NBC’s “Today Show,” Matt Lauer interviewed two AFTD community members — AFTD volunteer and donor Donald Newhouse and AFTD Medical Advisory Council member Dr. Ted Huey.

9/29/2016 — AFTD held its Hope Rising Benefit in New York City.

10/2/2016 — Also with donor support, a second new AFTD full-page awareness advertisement (pdf) appeared in Section A of the Sunday New York Times. 

A Global Impact

World FTD Awareness Week engaged people across the globe.

Following is a small sample of the events that took place:

bilbaoSpain — FTD awareness events took place in Bilbao (left) and Madrid, hosted by the Asociación de Dementia Frontotemporal.

Australia — The Australian Fronto-Temporal Dementia Association took a creative approach to raising funds to fight FTD with its “Black-Tie Dinner That Will Never Happen” (pdf).

United Kingdom — The London-based organization Rare Dementia Support marked World FTD Awareness Week with a cupcake-sale fundraiser and screened the FTD-focused documentary Looks Like Laury, Sounds Like Laury.

franceAdditionally, Laura-Doe Harris of Oxford organized an Food for Thought event called “Apples for Awareness” in honor of her mother, who has been living with a form of FTD for the last 15 years.

Finally, the Crawley and Horley Observer covered World FTD Awareness Week in a September 22 article.

Canada — Dementia advocate Matthew Dineen held a Food for Thought event at the school where he teaches, and where several of his children attend.

France — An estimated 115 people attended a one-day conference (pdf) at the Pitié-Salpêtrière Hospital in Paris (above), hosted by France’s leading FTD organization, the Association France-DFT.

Germany — Deutsche Alzheimer Gesselschaft e.V. marked the week by sharing a new brochure online.

Netherlands — Dutch public television aired a program about the link between FTD and depression.

Media Coverage

World FTD Awareness Week has been the focus of numerous articles and op-eds in media outlets throughout the country.

On October 1, The Altoona Mirror newspaper in Pennsylvania published an op-ed, “Raising Knowledge About FTD,” written by Cindy Odell, who has been diagnosed with FTD.

On October 6, Delaware State News ran a powerful op-ed written by Eugenia Thornton, whose husband of 41 years, Don, has FTD and is living in a veterans’ home.

AFTD volunteer Peggy Plagemen told the story of her late husband’s FTD journey to WWBT-TV in Richmond, Virginia.

Additionally, media outlets such as the Huffington Post and New York Social Diary devoted coverage to AFTD’s September 29 Hope Rising event.

Social Media Outreach

World FTD Awareness Week made its presence felt on social media as well. Throughout the week, people whose lives have been touched by FTD shared the following message on social media platforms:

Many countries, one world, one hope to #endFTD.

Meanwhile, World FTD Awareness Week was a popular focus of discussion on the World FTD United Facebook page, where many people affected by FTD shared their photos and stories (below).