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FTD Registry @EndFTDregistry

The Registry is an online database to collect information from those affected by all types of frontotemporal degeneration (FTD). FTDregistry.org Joined March 2016
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FTD Registry @EndFTDregistry

19 hours ago

FTD can steal your words, your connection, your voice. Join the FTD Disorders Registry to help researchers find treatments and a cure. FTDRegistry.org #endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch

FTD Registry retweeted
PennFTDCenter Profile Picture

Penn FTD Center @PennFTDCenter

2 days ago

In honor of FTD Awareness Week 2025, the Penn FTD Center staff has put together a series of videos to share tips and information! Nurse Practitioner Gillian Bradley provides caregiver strategies for symptom management. Click on the link in our bio to watch now! #endFTD

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

2 days ago

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. #WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch

FTD Registry retweeted
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AIMFT @endFTD

2 days ago

E SE FOSSE FTD? Lo sapevi che la FTD può trasformare una persona cara in uno sconosciuto? #endFTD #Italy #WorldAwarenessWeek2025 #WhatIfItsFTD

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

2 days ago

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-sur… #endFTD #FTDAwareness #FTDResearch

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FTD Registry @EndFTDregistry

3 days ago

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. FTDregistry.org #EndFTD #FTDAwareness

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

4 days ago

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 Registry @EndFTDregistry

a week ago

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

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

a week ago

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-question… #endFTD

FTD Registry retweeted
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The AFTD @AFTDHope

3 weeks ago

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 three powerful stories that shed light on this journey. 📅 Thursday, September 25 at 12 p.m. ET 💻 Register here:…

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

2 weeks ago

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

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

2 weeks ago

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

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

2 weeks ago

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-read… #EndFTD

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FTD Registry @EndFTDregistry

3 weeks ago

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-tr… #endFTD #FTDresearch

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FTD Registry @EndFTDregistry

4 weeks ago

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/registry… #AAIC2025 #endFTD

FTD Registry retweeted
AFTDHope Profile Picture

The AFTD @AFTDHope

4 weeks ago

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. In a moving discussion, Mrs. Willis talked about: • The onset of symptoms in her husband • The…

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

4 weeks ago

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-impo…

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FTD Registry @EndFTDregistry

a month ago

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

FTD Registry retweeted
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The AFTD @AFTDHope

a month ago

A study that includes a number of AFTD grantees and Medical Advisory Council emeritus as authors analyzes over 4,000 proteins to look for potential biomarkers and better understand the biological mechanisms of #FTD. 🔬 Learn more: bit.ly/3GUBPlb

EndFTDregistry Profile Picture

FTD Registry @EndFTDregistry

a month ago

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-question… #FTDQuickQuestion #EndFTD

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