Being Counted is an Act of Hope - FTD Disorders Registry Being counted is an act of hope, a way for individuals and families impacted by frontotemporal degeneration to turn their lived experience into momentum for research, visibility, and a future with bet...

Rare Disease Week starts today. FTD is rare, but our community is strong. Being counted in the FTD Disorders Registry helps drive research, inform better studies, and move us closer to treatments.

Read more:
ftdregistry.org/press/being-...

#endFTD #RareDiseaseWeek

FTDToolkit A novel online platform to monitor symptom progression in Frontotemporal Dementia and carers’ wellbeing

Professor Eneida Mioshi and her team at @uniofeastanglia.bsky.social (UK) are developing a free, online intervention designed to support family carers of people living with #frontotemporaldementia (FTD). To participate or learn more about the program, visit ftdtoolkit.org

#endFTD

Some behaviors related to FTD can lead to unexpected interactions with the criminal justice system. This month’s Quick Question asks whether you or your loved one have experienced this. Share your voice: ftdregistry.org/quick-questi...

#endFTD

You Joined. Now What? Five Small Ways to Stay Research Ready - FTD Disorders Registry You joined the FTD Disorders Registry. Now learn five simple ways to stay research ready and strengthen the future of FTD research.

You joined the FTD Disorders Registry. Now what?

Update your info. Enroll in the Registry Research Study. Complete surveys.

FTD is rare. Every participant matters. Numbers have power.

Learn more: ftdregistry.org/press/you-jo...

#endFTD #FTDresearch

The @alzheimerssoc.bsky.social initiative to raise awareness among the public of how those affected by #dementia can be supported in everyday settings. I've joined the Friends #endFTD being under recognised #svPPA #carer

The @pennftdc.bsky.social and @theaftd.bsky.social are offering the FTD Clinical Research Learning Institute, a free virtual program for people impacted by #FTD.

Become a certified FTD Research Ambassador and help improve FTD research.

Apply: www.pennftdcenter.org/ftdcrliresea...

#endFTD

Snowy Valleys Council 2026 Australia Day Awards Announced The 2026 Snowy Valleys Council Australia Day Award recipients were announced at a special dinner ceremony held on Saturday 24 January, with invited finalist nominees joining Councillors and dignitarie...

Congratulations to Jane Dean on being named the 2026 Snowy Valleys Citizen Achievement Award! Jane, Stephen, and their family have made an extraordinary contribution to raising awareness and funds for #FTD research within the Tumut community. #endFTD

www.snowyvalleys.nsw.gov.au/News-Media/S...

Photo of AFTD Ambassador Scott Oxarart with his father, smiling and posing together. Quoted text describes Scott's effort to raise awareness about FTD in Reno, Nevada, featuring the AFTD's With Love campaign logo.

With Love is more than a fundraiser — it’s a way to honor someone you love, raise awareness of FTD, and support families facing this disease.

This February, join Scott and others as they turn love into action. Create a page, share your story, and help #endFTD: https://bit.ly/4pPEpJs

Modeling contributions of cognition and apathy to functional impairment in younger‐onset dementia INTRODUCTION Overlaps in symptom presentation limits the capacity to predict functional impairment and future care needs in younger-onset dementia syndromes. METHODS A general additive model (GAM)...

New paper by @samuelwarren.bsky.social and colleagues,

Modeling contributions of cognition and apathy to functional impairment in younger-onset dementia

doi.org/10.1002/dad2...

@alzdemjournals.bsky.social
@muireannirish.bsky.social
@brainandmindcentre.bsky.social
@sydney.edu.au

#endFTD

Strengthening FTD Research with CureGRN - FTD Disorders Registry Progress toward an FTD cure depends on communities and researchers working together.

Progress toward an FTD cure depends on communities and researchers working together.

Learn how the FTD Disorders Registry and the Cure GRN-FTD community are helping advance research and future clinical trials: ftdregistry.org/press/streng...

#endFTD #CureGRN #FTDresearch

2025 was a year of momentum for the FTD Disorders Registry, with a 97% increase in new accounts. Learn more about the year’s growth and impact: ftdregistry.org/press/a-year...
#endFTD #FTDresearch

AFTD Welcome 2026 banner featuring the year filled with various photos of AFTD volunteers

2026 begins with community at the center. ❤️

These faces represent strength, advocacy, and the many ways people show up for the FTD community. As the new year unfolds, AFTD remains committed to paving the path forward to #endFTD.

Save the Date Image for The AFTD-Team Race Season 2026_1

Save the Date Image for The AFTD-Team Race Season 2026_2

Save the Date Image for The AFTD-Team Race Season 2026_3

🏃‍♀️ Save the Date: The AFTD-Team Race Season 2026 🏃‍♂️

Join The AFTD-Team as we take on races across the country to raise awareness and support for people and families affected by frontotemporal degeneration. Every step, every race, every city, we run to #endFTD.

Sign up today: https://bit.ly/48W6IPW

FTD certainly made Christmas worse than I expected. And I had a low bar. #endFTD #FTD #dementia #ftd

#endFTD and other dementia needs research and the scientists. BBC Today #Guesteditor on Boxing Day featured @tspiresjones.bsky.social and @clairedurrant1.bsky.social, funded in Edinburgh by #raceagainstdementia great story. #bbcjamesgalagher

#endFTD and other #dementia research featured on #BBC #Guesteditor on Boxing Day (7:35 GMT). @clairedurrant1.bsky.social

Our 2025 group photo. Big smiles, big plans for the year ahead.

#frontotemporaldementia #primaryprogressiveaphasia #ftd #ftld #ppa #endFTD

@brainandmindcentre.bsky.social
@sydney.edu.au

Attending #CTAD2025 this week? Stop by our poster P407 to learn more about the FTD Disorders Registry. #endFTD

Irene and Lottie find the right support at a challenging time Irene and Lottie find essential support and resources through Carer Conversations to navigate the challenges of caring for a loved one with Frontotemporal Dementia.

We’re deeply grateful to #DementiaSupportAustralia and #AFTDA for creating Carer Conversations, a lifeline for people across Australia who are supporting someone living with #frontotemporaldementia.

www.dementia.com.au/resource-hub...

#endFTD

On #GivingTuesday, we’re grateful to @theaftd.bsky.social & The Bluefield Project, whose support makes the Registry possible.

Please consider supporting these organizations driving progress to #endFTD.

AFTD: www.theaftd.org/get-involved...
Bluefield Project: www.bluefieldproject.org/donate/

#endFTD being under-researched as distinct from Alzheimer's in where in the brain it is detected, the proteins to test for, and how it presents and progresses.

#endFTD being neglected as researchers have less funds than Alzheimer's cases.

#endFTD being under reported and not explained as dementia that is identifiable in its symptoms and is not Alzheimer's. #RaceAgainstDementia please join BlueSky

One drop can tell a story. Discover how biosamples are powering FTD research and how you can help: ftdregistry.org/press/what-w...
#endFTD

Another successful FRONTIER Charity Golf Day in Tumut! We’re deeply grateful to the Tumut community and the Dean family for their incredible support. Your support makes it possible for us to advance our understanding and treatment of #FTD.

#endFTD #PPA

@brainandmindcentre.bsky.social

FTD Research Roundup: What’s New This Fall - FTD Disorders Registry The Fall Research Roundup highlights new studies now enrolling people living with FTD, care partners, and biological family members.

New FTD studies are now recruiting.

See this season’s Fall Research Roundup to learn how you can help move FTD science forward: ftdregistry.org/press/ftd-re...

#endFTD #Research #NumbersHavePower

ISFTD Webinar on AI in FTD: From Neuropathology to MRI to Clinic - ISFTD

Join ISFTD's Webinar on AI in FTD: From Neuropathology to MRI to Clinic

Wednesday, 29th October, 2025 at 11:00 AM EST.

www.isftd.org/events/webin...

#endFTD
#ISFTD

What are Registry participants most interested in?

Each number represents someone looking for answers and contributing to discovery.

Learn more: ftdregistry.org/press/what-t...

#endFTD

Son holding his Mom's hand as she is bravely fighting a terminal illness.

I don’t exactly know why I’m posting this, but my mom is giving her all in the last round of her fight with #FTD. She’s beaten all odds, every prognosis, every step of the way – and I couldn’t be prouder or more grateful for everything. I love you Mom, you’re the best. #EndFTD @theaftd.bsky.social

Recorded videos from our FRONTIER information day are now on our Youtube channel. In this video, David Foxe discusses how everyday function, cognition, and behaviour change over time in FTD and PPA.

www.youtube.com/watch?v=hQWX...

@brainandmindcentre.bsky.social
#endFTD