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FTD Disorders Registry @ftdregistry.bsky.social · 07/10/2026

Registry Director Carrie Milliard is attending the "Translating TMEM106b Research to Clinical Practice" Workshop hosted by @pennftdc.bsky.social. These discussions help lay the groundwork for how emerging FTD research may ultimately inform care for people and families impacted by FTD.

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FTD Disorders Registry @ftdregistry.bsky.social · 07/10/2026

The FTD Disorders Registry will be at #ISFTD this week, connecting with researchers, partner organizations, and others working to move FTD research forward. Learn what happens at an FTD research conference and why these meetings matter: ftdregistry.org/press/what-h... #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 04/10/2026

For World FTD Awareness Week, we’re putting a Spotlight on FTD Awareness. Greater awareness can help people recognize frontotemporal degeneration, connect with support, and understand why research across these different diagnoses matters. #spotlightFTD #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 02/10/2026

For World FTD Awareness Week, we’re putting a Spotlight on Researchers. Lauren Massimo, PhD, CRNP, FAAN, shares what gives her hope about the future of frontotemporal degeneration research. #spotlightFTD #endFTD #WorldFTDAwarenessWeek #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 01/10/2026

For World FTD Awareness Week, we’re putting a Spotlight on Participants. FTD research cannot move forward without people who take part. Every participant adds to what we can learn. Numbers Have Power. ftdregistry.org #spotlightFTD #endFTD #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 30/09/2026

For World FTD Awareness Week, we’re putting a Spotlight on FTD Research. Participants, families, researchers, clinicians, data and collaboration all help move research forward. ftdregistry.org/press/what-d... #spotlightFTD #endFTD #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 29/09/2026

For World FTD Awareness Week, we’re putting a Spotlight on the FTD Disorders Registry. Numbers Have Power. Because FTD is rare, every participant matters. Learn more or join: www.ftdregistry.org #spotlightFTD #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 24/09/2026

Collaboration is key to moving FTD research forward! We joined our @theaftd.bsky.social colleagues at the FTD Research Roundtable for important conversations about the future of FTD research. Thank you to AFTD for bringing the FTD research community together! #FTDResearch #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 24/09/2026

The @theaftd.bsky.social FTD Research Roundtable continues today! FTD Disorders Registry President Penny Dacks, PhD, is participating in discussions focused on biomarker strategies for FTD clinical trials and the challenges and opportunities facing FTD research. #FTDResearch #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 23/09/2026

Carrie Milliard, MS, CGC, CCRC, Director of the FTD Disorders Registry, is at @theaftd.bsky.social's Research Roundtable this week, sharing how the Registry is helping build a research-ready community and move FTD research forward. #FTDResearch #FrontotemporalDegeneration #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 22/09/2026

Why is recruiting participants for rare disease research so challenging? Read about the challenges of rare disease research recruitment and how we can help address them: ftdregistry.org/press/why-ra... #endFTD #FrontotemporalDegeneration #RareDiseaseResearch #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 19/09/2026

Are you participating in @theaftd.bsky.social's Walk for FTD in Des Moines today? Stop by and say hi to Quinn at the FTD Disorders Registry booth! #endFTD #WalkforFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 18/09/2026

FTD research doesn’t move forward because of one study, one researcher, or one dataset. It takes participants, families, clinicians, researchers, data, all working together. See how the FTD Disorders Registry helps support that work. ftdregistry.org/press/what-d... #endFTD #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 15/09/2026

Behavioral changes can be challenging for people living with FTD and those who support them. This month’s Quick Question asks about these changes and how confident you feel managing them. Share your perspective: ftdregistry.org/quick-questi... #FTDResearch #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 14/09/2026

World FTD Awareness Week is coming Sept 28–Oct 4. This year, we’re putting a Spotlight on FTD and on the people, families, researchers, clinicians & advocates helping move understanding and research forward. Learn more and get involved: www.worldftdunited.net/awareness2026 #spotlightFTD #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 09/09/2026

Do you need an FTD diagnosis to join the FTD Disorders Registry? No. The Registry is open to anyone interested in frontotemporal degeneration research, including people diagnosed, family members, care partners, healthcare providers and others. Learn more: www.FTDRegistry.org #endFTD #FTDresearch

Registry FAQs

Do you need an FTD diagnosis to join the FTD Disorders Registry?

No. You do not need an FTD diagnosis to join the Registry.

The Registry is open to anyone interested in frontotemporal degeneration research, including people diagnosed, family members, care partners, healthcare providers and others who want to stay connected to research opportunities.

www.FTDRegistry.org
Numbers have power. Join the Registry. Advance the science.

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FTD Disorders Registry @ftdregistry.bsky.social · 04/09/2026

Caregivers have an opportunity to hear directly about advances in FTD research & new approaches to care at Caregivers Day during #ISFTD2026. Date: Friday, Oct. 9, 2026 Location: Philadelphia, PA View the program and register: isftd2026.org/caregivers-d... #endFTD #FTD #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 04/09/2026

There’s no one right way to participate in #FTDresearch. Learn more about the different options and find what works for you and your family. ftdregistry.org/press/unders... #FTDRegistry #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 28/08/2026

You don’t need to have an FTD diagnosis to make a difference in FTD research. Biological family members and those with a genetic link can play an important role by joining the FTD Disorders Registry. Learn more and join: ftdregistry.org/press/who-ha... #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 27/08/2026

When someone is diagnosed with FTD, families often ask what comes next. The FTD Disorders Registry is a valuable resource to share early. Learn more: ftdregistry.org/for-healthca... #FTDResearch #FTDRegistry #endFTD #frontotemporaldegeneration

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FTD Disorders Registry @ftdregistry.bsky.social · 25/08/2026

A new approach to PSP research is underway. Learn how the PSP Trial Platform is designed to study multiple potential treatments within one shared clinical trial framework. Learn more: ftdregistry.org/press/a-new-...

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FTD Disorders Registry @ftdregistry.bsky.social · 24/08/2026

Genetic information can help advance FTD research. Registry participants can share genetic test results, helping researchers better understand FTD and identify potential study matches. Learn more: ftdregistry.org/press/why-yo...

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FTD Disorders Registry @ftdregistry.bsky.social · 20/08/2026

Recruiting for FTD research? The FTD Disorders Registry can help researchers better understand potential study populations and support recruitment for approved studies. Learn more at www.FTDRegistry.org #endFTD #FTDResearch #frontotemporaldegeneration #FTDRegistry

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FTD Disorders Registry @ftdregistry.bsky.social · 19/08/2026

FTD is rare. That means every research participant can make a difference. By sharing their experience, participants help researchers build a stronger picture of FTD and support future studies. Learn more: ftdregistry.org #endFTD #FTDResearch

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FTD Disorders Registry @ftdregistry.bsky.social · 18/08/2026

FTD research needs more than people diagnosed with FTD. Biological family members, care partners, LARs, clinicians, and researchers all have a role to play. See how each contributes to the FTD Disorders Registry: ftdregistry.org/press/who-ha...

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FTD Disorders Registry @ftdregistry.bsky.social · 31/07/2026

Last day of Join in July! Thank you to everyone who joined the FTD Disorders Registry and helped move FTD research forward. Every participant strengthens our community and brings us closer to the discoveries we need. Join today: www.FTDRegistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · 27/07/2026

It’s the final week to Join in July. FTD research depends on people willing to participate. By joining the FTD Disorders Registry, you can help researchers better understand FTD and build a stronger, more research-ready community. Join the Registry today: www.FTDRegistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · 23/07/2026

The FTD Disorders Registry was proud to present new research at #AAIC26! Our poster demonstrates how we are helping researchers connect with a growing, research-ready FTD community & providing valuable insights to support study recruitment. View the poster: ftdregistry.org/press/ftd-di... #endFTD

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FTD Disorders Registry @ftdregistry.bsky.social · 21/07/2026

Every person who joins the FTD Disorders Registry helps move research forward. Real impact starts with participation. Join in July: www.FTDRegistry.org #endFTD #FTDResearch #FTD #frontotemporaldegeneration

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FTD Disorders Registry @ftdregistry.bsky.social · 14/07/2026

FTD research needs a strong, research-ready community. By joining the FTD Disorders Registry, you can help researchers better understand FTD and support future studies. Numbers have power. Join the Registry. Advance the science. Join in July: www.FTDRegistry.org #endFTD #FTDResearch #AAIC26

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FTD Disorders Registry @ftdregistry.bsky.social · 09/07/2026

Headed to #AAIC2026? Visit the FTD Disorders Registry and @theaftd.bsky.social at Booth #1402! Learn how we're connecting a growing, research-ready FTD community with researchers to help accelerate FTD research. We look forward to seeing you in London!

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FTD Disorders Registry @ftdregistry.bsky.social · 09/07/2026

You do not need a diagnosis to join. Anyone with an interest in FTD research can be part of the Registry: www.FTDRegistry.org #FTDResearch #FrontotemporalDegeneration #endFTD

Your participation makes a difference.
Anyone with an interest in FTD research can join the FTD Disorders Registry.
Eligible adults in the US and Canada may also participate in the Registry Research Study.
Your information is kept safe and confidential.
Your participation helps researchers today and for generations to come.
www.FTDregistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · 06/07/2026

Researchers look at enrollment numbers. Your participation can help show that the FTD community is ready for research. www.ftdregistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · 01/07/2026

FTD research needs a strong, research-ready community. Everyone is eligible to join the FTD Disorders Registry. Join in July and help advance the science: ftdregistry.org/press/join-i... #FTDResearch #FTD #JoininJuly #ResearchReady

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FTD Disorders Registry @ftdregistry.bsky.social · 11/06/2026

What does “deidentified data” really mean? Learn how shared information can help advance FTD research while protecting participant privacy. Read more: ftdregistry.org/press/what-d... #FTDResearch #FTDRegistry

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FTD Disorders Registry @ftdregistry.bsky.social · 04/06/2026

The future of FTD research is collaborative. By connecting data, researchers, and lived experience, the field is moving toward more meaningful progress for families impacted by FTD. Read more: ftdregistry.org/press/the-fu...

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FTD Disorders Registry @ftdregistry.bsky.social · 20/05/2026

The CEDAR Study is hosting a webinar on brain health on Thursday, May 28th at 1:00 PM PST (4:00 PM EST). Dr. Rachel Whitmer from UC Davis, the Lead Investigator of the POINTER Study, will be the featured speaker. Please use this link to register: ucsf.zoom.us/webinar/regi...

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FTD Disorders Registry @ftdregistry.bsky.social · 12/05/2026

Want to help move FTD research forward? Follow these tips to stay research ready: ftdregistry.org/press/stay-r...

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FTD Disorders Registry @ftdregistry.bsky.social · 28/04/2026

Because FTD is rare, every person in the Registry matters. Staying research ready can be as simple as keeping your profile up to date. Log in and make sure your interests are up to date so you can hear about research opportunities that are right for you. www.FTDRegistry.org

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FTD Disorders Registry @ftdregistry.bsky.social · 17/04/2026

In this month's Quick Question, we are asking about palliative care referrals. Visit the link to share your experience and read last month's results: ftdregistry.org/quick-questi...

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FTD Disorders Registry @ftdregistry.bsky.social · 15/04/2026

Looking for FTD clinical trials? Here’s where to start and how the FTD Disorders Registry helps you stay informed about research opportunities.https://ftdregistry.org/press/how-to-find-clinical-trials-for-ftd/

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FTD Disorders Registry @ftdregistry.bsky.social · 14/04/2026

Join us at the @theaftd.bsky.social Education Conference. Stop by the FTD Disorders Registry booth to learn how you can be part of a research-ready community and help advance the science. Can't make it in person? Join via the livestream. Learn more: www.theaftd.org/education-co...

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FTD Disorders Registry @ftdregistry.bsky.social · 05/04/2026

For those who celebrate, we wish you a meaningful Easter. We know holidays can bring both comfort and challenge. Hope in the FTD community is built together through action, connection, and participation. Thank you for being part of this research-ready community.

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FTD Disorders Registry @ftdregistry.bsky.social · 02/04/2026

Wishing peace and renewal to all observing Passover. As we reflect on resilience and community, the Registry remains committed to supporting individuals and families impacted by FTD and advancing research together.

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FTD Disorders Registry @ftdregistry.bsky.social · 31/03/2026

The ASPIRE-FTD clinical trial has expanded to a fourth cohort, continuing to advance gene therapy research. Read more: ftdregistry.org/press/aspire...

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FTD Disorders Registry @ftdregistry.bsky.social · 19/03/2026

This month’s Quick Question asks about the diagnostic journey. Share your experience and view last month's results: ftdregistry.org/quick-questi...

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FTD Disorders Registry @ftdregistry.bsky.social · 13/03/2026

FTD Disorders Registry Director Carrie Milliard represented the Registry at last night's annual #HopeRising Benefit, which supports the @theaftd.bsky.social mission and paves the path forward to greater awareness, effective care, and research into urgently needed treatments for FTD.

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FTD Disorders Registry @ftdregistry.bsky.social · 11/03/2026

Care partners are essential partners in research. By sharing lived experience through the FTD Disorders Registry, families help researchers understand how #FTD unfolds in real life. Read more: ftdregistry.org/press/what-c...

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FTD Disorders Registry @ftdregistry.bsky.social · 19/02/2026

Some Registry questions about finances or work life may feel personal. They are not random. They help researchers understand how FTD affects daily life and improve research and care. Read more: ftdregistry.org/press/why-we...

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FTD Disorders Registry @ftdregistry.bsky.social · 18/02/2026

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

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