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FTD Disorders Registry @ftdregistry.bsky.social · 5d

What would make a treatment for FTD truly effective?

In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.

#endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 8d

Registry data helps researchers spot patterns, shape better studies, and move us closer to treatments for FTD. Every participant makes a difference.

Read more: ftdregistry.org/press/the-ro...

#FTD #EndFTD #FTDResearch

The Road Ahead: How Registry Data Can Drive Breakthroughs - FTD Disorders Registry

Progress is possible. See how Registry data can unlock breakthroughs in FTD research just as new treatments are showing progress in other neurological disorders.

ftdregistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · 11d

FTD is genetic in about 20% of cases. Yet only 23.3% of people diagnosed and 12.4% of relatives have had genetic testing. Learn why this matters: ftdregistry.org/press/what-r...

#endFTD #WorldFTDAwarenessWeek #FTD #Genetics

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FTD Disorders Registry @ftdregistry.bsky.social · 12d

During World FTD Awareness Week, we recognize the challenges care partners face. The daily demands of FTD can make research participation difficult, yet their voices are essential to progress.

Learn more: ftdregistry.org/press/how-ca...

#WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness

FTD Disorders Registry @ftdregistry.bsky.social · 12d

FTD impacts more than health. It strains finances. Care partners say the top job effects are retiring early, cutting hours permanently, or cutting them temporarily.

Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi...

#WorldFTDAwarenessWeek #EndFTD

FTD Disorders Registry @ftdregistry.bsky.social · 13d

FTD impacts care partners too with stress, lost income & financial strain.

At #AAIC25, the FTD Disorders Registry showed how misdiagnosis & delays deepen that burden: ftdregistry.org/press/regist...

This #WorldFTDAwarenessWeek, let’s honor care partners & push for faster diagnoses.

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FTD Disorders Registry @ftdregistry.bsky.social · 14d

FTD can steal your words, your connection, your voice. Join the FTD Disorders Registry to help researchers find treatments and a cure. www.FTDRegistry.org

#endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 15d

FTD disorders can make someone seem like a stranger to their loved ones.

Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org

#WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 15d

World FTD Awareness Week starts with action!

See how survey responses from the Registry Research Study become powerful data that drives FTD disorders research.

Read more: ftdregistry.org/press/from-s...

#endFTD #FTDAwareness #FTDResearch

From Surveys to Science: How Registry Data Becomes Research - FTD Disorders Registry

Every survey response in the Registry Research Study helps turn lived experience into research data that drives discovery.

ftdregistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · 16d

Memory isn’t usually the first thing to change in FTD.

Registry data shows the most common early symptoms are:
• Language challenges
• Cognitive changes
• Mood changes

Raising awareness helps speed diagnosis & research.
www.FTDregistry.org

#EndFTD #FTDAwareness #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 17d

World FTD Awareness Week begins today! FTD often starts between ages 45–65, making it the most common dementia under 60. Let’s raise awareness and drive research toward treatments and a cure. #EndFTD #FTDAwareness #USA

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FTD Disorders Registry @ftdregistry.bsky.social · 22d

The @theaftd.bsky.social Research Roundtable is underway! Dr. Michelle Campbell (FDA) led a session on defining meaningful change, featuring FTD Registry data from Carrie Milliard, MS, CGC, and insights from advocates Julia P. & Dr. Joseph M. #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 22d

New Quick Question is live!

Each month, the FTD Disorders Registry asks one simple question to learn more from our community. Share your answer today, and see how others responded to last month’s question.

ftdregistry.org/quick-questi...

#endFTD

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Reposted by FTD Disorders Registry

The Association For Frontotemporal Degeneration @theaftd.bsky.social · Sep 5

Finding answers to an FTD diagnosis is often a long and difficult road. In our upcoming webinar, The Lived Experience with FTD: The Road to an Diagnosis, you'll hear 3 powerful stories that shed light on this journey.

📅 9/25 at 12 pm
💻 Register here: https://bit.ly/3JLiqUL

Sponsored by AviadoBio

Promotional image for an AFTD HelpLine webinar titled 'The Lived Experience with FTD: The Road to an FTD Diagnosis' scheduled for September 25, 2025, featuring two individuals having a conversation in a modern office setting. The event is sponsored by AviadoBio.

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FTD Disorders Registry @ftdregistry.bsky.social · 27d

Registry Director Carrie Milliard joined real-life superheroes at the Rainwater Charitable Foundation’s Tau Consortium Investigators’ Meeting: scientists, clinicians & advocates pushing toward breakthroughs in tauopathies. Together, we’re stronger. 💜 #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 28d

FTD Disorders Registry Director Carrie Milliard, MS, CGC, CCRC and Nicole Bjorklund, PhD, Director of Research and Grants for @theaftd.bsky.social shared how we are supporting FTD research initiatives at Rainwater Charitable Foundation's 2025 Tau Consortium Investigators Meeting this week. #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 29d

World FTD Awareness Week is coming Sept 21–27, 2025.
This year we ask: “What If It’s FTD?”

Update your profile, use the toolkit, and share your story to raise #FTDawareness.

Learn more: ftdregistry.org/press/get-re...

#EndFTD

Get Ready for World FTD Awareness Week - FTD Disorders Registry

World FTD Awareness Week is September 21-27, 2025.

ftdregistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · Sep 4

Amylyx’s ORION trial in PSP has ended after not meeting its goals. While the news is disappointing, every study adds knowledge that guides future research.

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

#endFTD #FTDresearch

ORION Trial Ends, Reinforcing the Need for Continued FTD Research - FTD Disorders Registry

Research is our roadmap to breakthroughs, and sometimes setbacks are the fuel that drive us forward.

ftdregistry.org

FTD Disorders Registry @ftdregistry.bsky.social · Aug 29

FTD Disorders Registry data was featured in several posters at the Alzheimer’s Association International Conference this year in Toronto.

Learn more and view the posters: ftdregistry.org/press/regist...

#AAIC2025 #endFTD

Registry Data Featured at AAIC 2025 - FTD Disorders Registry

The FTD Disorders Registry showcased new insights at AAIC 2025.

ftdregistry.org

Reposted by FTD Disorders Registry

The Association For Frontotemporal Degeneration @theaftd.bsky.social · Aug 27

Emma Heming Willis was interviewed Tuesday night on “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special,” sharing her family’s experience of living with FTD.

🔴 Learn more: https://bit.ly/47Ny0sS

Emma Heming Willis interviewed by Diane Sawyer in a Prime Time Special, with both sitting in a room, as shown in an ABC News segment.

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FTD Disorders Registry @ftdregistry.bsky.social · Aug 27

Research is the key to #EndFTD. Bruce Willis’s diagnosis raised awareness about FTD disorders impacting thousands of families every day. Progress will come through research. Together, we can find answers.

ftdregistry.org/press/the-im...

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FTD Disorders Registry @ftdregistry.bsky.social · Aug 22

Anyone with an interest in FTD disorders research can join the Registry! Sign up here: www.ftdregistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · Aug 15

Thank you to everyone who answered questions about sleep challenges in last month's Quick Question. This month, we are asking about the types of health insurance coverage. To answer and see last month’s results, visit here: ftdregistry.org/quick-questi...

#FTDQuickQuestion #EndFTD

FTD Disorders Registry @ftdregistry.bsky.social · Jul 31

Thank you, #AAIC2025! We loved connecting with researchers, clinicians & advocates at our booth. Your curiosity and commitment to advancing #FTD understanding inspire us. Let’s keep moving toward earlier diagnosis and better care. #FTDRegistry #FTDResearch #EndFTD

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FTD Disorders Registry @ftdregistry.bsky.social · Jul 31

Join us for a free webinar on Wednesday, August 13, 2025 to explore the diagnostic journey for frontotemporal degeneration (FTD) and how we can improve detection and referral. Free CME and CEC credits available!

Register here: events.zoom.us/ev/AlPqObBF8...

#endFTD #neurology

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