Bruce Willis diagnosed with Frontotemporal dementia

On February 16, 2023 it was announced that American actor Bruce Willis had been diagnosed with Frontotemporal dementia. Willis’ family released a comprehensive and touching statement through the American FTD Association. In their statement, the Willis family thanked the public for their support, and highlighted the devastating impact that FTD can have, particularly when language difficulties are the main symptom, as is the case with Bruce Willis. They also wished to highlight that there is a need for more awareness and research of FTD so that others may not only understand but may also be helped through a diagnosis of FTD.

We are grateful to both Willis and his family for sharing this important news, as it will help to spread awareness about Frontotemporal dementia. We extend our support to the Willis family as they share this important news and continue in the journey with FTD.

The Willis family statement can be read here.

Professor Olivier Piguet of the Australian FTD Association was recently interviewed by Channel 10 on the diagnosis of Bruce Willis. Watch Prof Olivier comment on Bruce Willis' diagnosis here.

 


World FTD Awareness Week 2023

September 24th - October 1st 2023

Social Media Templates: World FTD Awareness Week 2023 | AFTD

World FTD United invites you to join us in celebrating and supporting those whose lives have been touched by frontotemporal degeneration (FTD) this year, spanning from September 24th through to October 1st, 2023.

Whether you are an FTD-diagnosed person, family member, care partner, healthcare professional, or a friend, you are encouraged to add your individual perspective to the worldwide conversation.

See the below table for the line up of prompts to encourage you to show your support for those with FTD and their close network of friends and family that support them - yourself included!

Day #1: Sunday, September 24th

Self Care - Take steps to support your own health.

Today is the start of World FTD Awareness Week 2023! The theme for today is self-care.

Taking steps to support your own health is important; whether you're a caregiver, someone carrying a genetic variant that causes FTD, or someone living with FTD today. Taking part is easy:

  1. First, take one small positive step today for your own self-care. Have coffee with a friend, take a walk, visit a favourite park or restaurant, or just spend a few minutes reading a book or listening to a favourite song. Be sure to focus for at least a few moments on caring for yourself!
  2. Tell others about what you're doing on social media, and encourage them to take a moment for self-care too.
  3. If you haven't already, we encourage you to change your profile picture on social media to show the world you care about FTD. Just visit the below link and follow our simple instructions on how!

Here is a message template that you can use as an idea/starting point for your social media post today:

World FTD Awareness Week is here. Each day this week I'll be taking a specific action to show the world I care about this disease and the global community it impacts.
Today, I'm focused on self-care - [describe the action or actions you're taking here to do so]. If you or someone you love is affected by FTD or any form of dementia, I encourage you to focus on self-care today as well, to benefit your own health in at least some small way.
#endFTD #ICareAboutFTD #WeCareAboutFTD

Day #2: Monday, September 25th

Support - Reach out to a caregiver or someone with FTD with a concrete form of support.

Today is the second day of World FTD Awareness Week 2023! The theme for today is support.

Focus on helping to make sure that care partners, family members, and people facing FTD, or any form of dementia have the help and support they need. Taking part is simple:

  1. If you're a care partner or someone living with dementia, ask someone for help and support with something today that could lighten the load of this journey. If the first person you thought of isn't available - try someone else!
  2. If you're not personally impacted by FTD or any form of dementia, a simple act of care and support for someone who is can do so much. Offer to send a food delivery or drop something off at their front door. Someone may be shy about accepting your help, but you can usually find a way to offer something that they can accept and use.
  3. Tell others about what you're doing on social media, and tag a few friends to get them involved too!
  4. If you haven't already, we encourage you to change your profile picture on social media to show the world you care about FTD. Just visit the below link and follow our simple instructions on how!

Here is a message template that you can use as an idea/starting point for your social media post today:

I'm proud to be part of World FTD Awareness Week - a global week of action to #endFTD. Day #2 of the campaign is focused on support.
Today I'm taking action, focused on support for this journey. [Describe the action being taken here]. If FTD or any form of dementia has impacted your life, help and support can make a difference. Don't face this journey alone. If you know someone affected, reach out and offer to help them with something concrete today.
#endFTD #ICareAboutFTD #WeCareAboutFTD

Day #3: Tuesday, September 26th

Sustain - Donate any amount to a trusted charity serving the FTD community.

Today is the third day of World FTD Awareness Week 2023! The theme for today is sustaining the work it will take to #endFTD.

Taking part today is simple. Just make a donation of any amount to a charity you trust focused on FTD, any form of dementia, or caregiver support of any kind.

The amount of your donation isn't important - the fact of it is.

  1. If you are looking for an organisation to support, please visit World FTD United to see a list of charities from different countries around the world that are focused on FTD.
  2. For those of you based in the United States, Emma Heming Willis and Nicole Petrie have started a special AFTD Food for Thought campaign - find more information about it via Emma Heming Willis' Instagram.
  3. If you haven't already, we encourage you to change your profile picture on social media to show the world you care about FTD. Just visit the below link and follow our simple instructions on how!

Here is a message template that you can use as an idea/starting point for your social media post today:

I', proud to take part in World FTD Awareness Week - a global week of action to #endFTD. Day 3 of the campaign is focused on sustaining the much-needed work on behalf of the FTD community, in countries around the world.
Today, I'm taking action by making a donation to [name the organisation(s) here of your choice], and I hope you'll do the same. The amount of your gift doesn't matter - the fact that you're willing to be a partner in work to address FTD and other forms of dementia and neurodegenerative disease does.
#endFTD #ICareAboutFTD #WeCareAboutFTD

 


Past News and Events

Dementia Awareness Week 2022

19 – 25 September 2022

Dementia Action Week 2022 held from 19 – 25 September 2022, which includes World Alzheimer’s Day on Wednesday 21 September 2022.

 

Find out more about the ‘A little support makes a big difference’ campaign and how you can get involved.


FTD Awareness Week 2022

26 September - 2 October 2022

SEMINAR:
FRONTIER FTD INFORMATION DAY
9.30: Tea & coffee

10.00: Welcome

Mirelle D’Mello

10.15: Lived experience of FTD

Ms Gina Llanes

10.45: Introduction & clinical progression in FTD

Prof Olivier Piguet (Director of FRONTIER, The University of Sydney)

11.15: Historical developments & research in FTD/PPA

Dr Cristian Leyton Moscoso (Postdoctoral Fellow, The University of Sydney)

11.45: Apathy and anhedonia in FTD

Dr Kristina Horne (Postdoctoral Research Associate, MIND Lab - The University of Sydney)

12.15: Lunch

13.00: Beyond the language disorder of PPA: cognition, mood, and activities of daily living

Dr David Foxe (Clinical Neuropsychologist, The University of Sydney)

13.30: Neuroimaging in FTD

Dr Ramon Landin-Romero (NHMRC Research Fellow and Senior Lecturer, The University of Sydney)

14.00: The FTD caregiver experience

Mirelle D’Mello (Psychologist, The University of Sydney)

14.30: Close

28 September 2022

9:30am – 2:30pm

 

M02F – Level 5 Lecture Theatre

Brain & Mind Centre

94 Mallet Street Camperdown 2050

 

Scan the QR code to register:

Please note, spaces for in-person attendance are limited.

 

Food and drinks will be provided

 

FRONTIER Research1

100 Mallet Street, Brain & Mind Centre, The University of Sydney, Camperdown NSW 2050

(02)  9114 4336 | [email protected] | https://frontierftd.org/


World FTD Awareness Week 2022

26 September - 2 October 2022

 

World FTD United-- The Journey to Diagnosis

Stay tuned for more – and get ready to share your own diagnosis story.
You can bring help, support, and understanding to families around the globe.
Visit WorldFTDUnited.net in the leadup to learn more.

Julane is hosting a Cuppa to raise funds to support people with dementia.

But she needs your help! Please make a donation to support her efforts and help her reach my goal to beat dementia.

All funds raised will support the work of Dementia Australia to provide vital support services for people living with dementia, their families and carers. These services include counselling, support groups, education and training.

Thank you for your support.

SEMINAR: FRONTIER FTD INFORMATION DAY 28 September 2022

World FTD Awareness Week - 27th September to 4th October 2020

In an effort convened by World FTD United, presenters from around the globe will mark World FTD Awareness Week by sharing information, helpful resources and updates on FTD through a free, daylong event.  The 2020 World FTD Marathon will feature online presentations from around the world, run by teams in Australia, Europe, and North and South America.

The presentations will be geared to families living with FTD, carers and health professionals who want to learn about FTD.

The Marathon kicks off in Australia at 10am on 3rd October.

You obtain more information and register for the 2020 World FTD Marathon at:  www.worldftdunited.net



Australia's biggest FTD research centre - FRONTIER - are holding their annual FTD Information and Support Day for Families and Carers on Tuesday October 31st 2017. This event will be held at the Brain and Mind Centre at the University of Sydney - Level 5, 94 Mallett Street, Camperdown, NSW. The day kicks off at 10am and finishes around 3.30pm. This is a not-to-be-missed opportunity to hear about cutting edge research and initiatives to support people affected by FTD. Click here to register.



World FTD Awareness Week 2017 is over for another year. It was held from September 24 to October 1, 2017 - it is never too late to get involved and raise awareness in your community! The World FTD United group have worked hard to plan this year's campaign theme: Think it's Alzheimer's? Think Again.

To close out FTD Awareness Week, an important paper was published in the journal Neurology about the cost of FTD compared to Alzheimer's. See the American FTD association website here for more information and a link to the original paper. Check out this handy, easy-to-share infographic. This paper highlights what many of us already know - the cost of FTD is twice that of Alzheimer's and yet this is not reflected in our public policy or service sectors. This highlights the message of Awareness Week: not all dementia is Alzheimer's, and the most common form of dementia for those under 60 is, in fact, FTD. 

In March 2017, the FTD Registry was launched. To find out more information, see Research.

Greg Kelly is a 60 year old man with FTD. He is riding his Harley Davidson across Australia, New Zealand, and the USA starting August 12th to raise awareness for younger-onset dementia. Find out more about this remarkable feat and how to donate to his cause via his Facebook page, or check out this media release, or his Prospectus for sponsorship.

He has been doing an incredible job raising awareness through his media appearances. Check out the following links:

  • Click here to listen to a radio interview he did on a Gold Coast station 1029 Hot Tomato
  • Click here to see Kell on My Gold Coast
  • Click here for his interview on Logan's 101 FM.
  • Click here for his interview on Channel 7's The Daily Edition
  • Click here for Kell's interview on ABD Radio's Evenings with Chris Bath [go to 1:01:58]
  • Click here to read an article in The Canberra Times about his trip to the nation's capital
  • Click here to hear his interview on 96five Afternoons
  • Click here to hear his live cross from the road
  • Click here to read about his journey in The Examiner

Kell has even got his own anthem, performed by Matt McLaren featuring Alex Straker. You can buy it here with all proceeds going to Kell's fundraising efforts!

And last but not least, there is a documentary being made about Kell - check out the full version here and share it with your friends!

We are proud supporters of Kell in his journey to raise awareness and funds for FTD and other types of dementia!

The 11th International Conference for Frontotemporal Dementias will be held in Sydney in 2018! AFTDA is proud to be part of the organising committee. The conference will be help from the 11 to 14th of November 2018 at the International Convention Centre in Sydney. For more information, please download the flyer and visit the conference website. You can also follow the Twitter page for updates!



The 10th International Conference for Frontotemporal Dementias was held from August 31, 2016 to September 2, 2016 in Munich, Germany. We hosted information sessions to provide updates from the conference. Please contact us for more details. 


Find out more about FTD in the media:


The three of us: a tale of a dedicated caregiver, her husband with dementia, and her new partner. Read about it here or listen to the full program here on ABC Radio National


Is it our relationship or is it something more? Listen to caregivers describe the effect of FTD on marriage - thanks to ABC Radio National


'It breaks your heart': a family's struggle with early-onset dementia - from the ABC


Why some dementia patients lack empathy - from the Sydney Morning Herald



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