Check out the AFTD “Food for Thought” FTD Awareness Events

Would you like to know about some of the Food for Thought events? Read the stories, help them achieve their goals. Click here to see them.


Food for Thought is a grassroots campaign created to educate people about FTD, while raising money to help fight this disease. This year it is timed to run during World FTD Awareness Week, and one week beyond, from September 25 through October 9, 2016.

One event has already raised over $38,000, the Third Annual Colonial Electric Food for Thought Charity Event, Steve Bellwoar, King of Prussia, PA. Nice going!!!


FTD: Where in the World?

Curious about organizations in other countries, here is a list of some associations in other countries.

Note: To translate the site to English if necessary, using the Chrome browser, right click on the home page and choose translate. I tried with Internet Explorer but it didn’t offer the translate option in all cases.

Australia – The Australian Fronto-Temporal Dementia Association (AFTDA)
Twitter : @theAFTDA

France – Association France-DFT pour les Dégénérescences Fronto-Temporales
FB | Twitter | Instagram | Youtube : @FranceDFT

Germany – Deutsche Alzheimer Gesellschaft e. V. Selbsthilfe Demenz
FB : @DeutscheAlzheimerGesellschaft

Italy – Associazione Italiana Malattia Fronto Temporale (AIMFT)
FB : Aimft – Associazione Italiana Malattia Fronto Temporale

Netherlands – FTD Lotgenoten
FB | Twitter | Youtube : @FTDlotgenoten

Spain – Asociación de Demencia Frontotemporal (ADEF)
FB : @asociacion.adef

United States – The Association for Frontotemporal Degeneration (AFTD)
FB : @TheAFTD | Twitter : @AFTDcure | Youtube : @TheAFTDorg

UK – Frontotemporal Dementia Support Group (FTDSG)
Twitter : @RareDementia

Source: World FTD United Facebook page –


The inaugural Hope Rising Benefit is the largest event of its kind ever hosted by AFTD, targeting increased awareness of FTD and support needed to accelerate AFTD’s mission.

hope-risingThose gathered on 9/29 will play a vital role in advancing: collaborative research; increased awareness; vital support for those directly impacted; education for healthcare professionals; and advocacy for appropriate, affordable services.

Three members of the AFTD community, Donald Newhouse, AFTD Board member Kathy Newhouse Mele, and Daniel Hedaya, will host the event.

The evening will celebrate one of AFTD’s most generous supporters, David Zaslav, President and CEO of Discovery Communications, who will be honored with the Susan Newhouse & Si Newhouse Award of Hope.

The event takes place at The Pierre Hotel in New York City on Thursday, September 29, 2016. Details.


Watch the “Today Show” Interview about FTD

Following up on my post yesterday about the Today Show interview this morning with AFTD volunteer and donor Donald Newhouse and AFTD Medical Advisory Council member Dr. Ted Huey, click here to watch the video.

today-showFrom the NBC Today Show web site – “It’s World FTD Awareness Week, spotlighting frontotemporal dementia, a serious ailment affecting the middle-aged. Don Newhouse, president of Advanced Publications, lost his wife, Suzi, to the disease, and his brother, Si, was recently diagnosed as well. Newhouse shares his story with TODAY’s Matt Lauer, and psychiatrist and neurologist Dr. Ted Huey explains that while Alzheimer’s disease affects the elderly, FTD typically manifests between ages 55 and 65. Learn the four main symptoms you should look out for.”




AFTD interview on NBC’s “Today Show” tomorrow Sept. 26th.

nbcOn Monday morning, 9/26, two AFTD community members will appear on NBC’s “Today Show.” Tune in at 8:30 a.m. Eastern to see AFTD volunteer and donor Donald Newhouse join AFTD Medical Advisory Council member Dr. Ted Huey on air.

Their appearance will bring FTD awareness to millions of viewers!

Donald Newhouse is President of Advance Publications, Inc. a holding company whose media properties include newspapers, Conde Nast Publications, Vogue, Vanity Fair, GQ, Architectural Digest and other magazines. His wife and brother were diagnosed with FTD. Last year at the World FTD Awareness event at the Freedom Tower, he announced a $5.75 million gift from the Samuel I. Newhouse Foundation, to The Association for Frontotemporal Degeneration (AFTD) for a multi-year FTD Biomarkers Initiative.

Dr. Ted Huey, one of the foremost specialists in FTD, is an Assistant Professor of Psychiatry and Neurology at Columbia University College of Physicians and Surgeons in the Departments of Psychiatry and Neurology, the Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, and the Gertrude H. Sergievsky Center.



World FTD Awareness Week 2016

World FTD Awareness Week is September 25 – October 2. Global 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.

For thlogoe second year, we are joining together to mark a common week for advocacy to raise awareness of FTD, and the need for a comprehensive, collaborative response. For all those whose lives have been touched by FTD, that response cannot come soon enough.

Wherever they live, families deserve hope for a future in which FTD in effectively diagnosed, treated, cured, and ultimately, prevented.

Go to the AFTD site for more information about events and what you can do to participate.

FTD Professional Caregiver Presentation in Southbury

FirstLight Home Care’s “Break Fast & Business”, a networking meeting for home healthcare and business professionals

Topic: “Caregiving for a Person Living with Dementia caused by Frontotemporal Degeneration (FTD)”

0056Speaker: Ed Fitzgerald, caregiver and volunteer with the Association for Frontotemporal Degeneration

Ed will talk about what FTD is, how it differs from Alzheimer’s, his experience as a caregiver for his wife including an approach to using the iPad that he developed to keep her engaged, and resources available for professional

When: Friday, September 23 from 8:00 am to 9:00 am

Where: On the Mend Medical Supplies & Equipment, 385 Main Street South, Southbury, CT 06488

RSVP required, space is limited: Sara Guillemette 203-577-8979,