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

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

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

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

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

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!

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

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

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

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

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...

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...

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

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

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...

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/

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...

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.

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.

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

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

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.

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...

Louder Than Words is a new program from CurePSP that helps people living with PSP, CBD, and MSA preserve their voice through free voice banking tools. Learn more: ftdregistry.org/press/louder...

Louder Than Words: CurePSP Helps People Preserve Their Voice - FTD Disorders Registry

CurePSP’s Louder Than Words program provides free voice banking and AI voice cloning tools for people living with PSP, CBD, and MSA, helping individuals preserve their voice and stay connected with lo...

ftdregistry.org

FTD is a spectrum, not a single diagnosis. Recognizing the differences between subtypes helps researchers design smarter studies, accelerate discoveries, and move us closer to effective treatments. Learn more: ftdregistry.org/press/ftd-is...

FTD Is Not One Disease: Why Subtypes Matter for Research - FTD Disorders Registry

FTD is a spectrum, not a single diagnosis. Recognizing the differences between subtypes helps researchers design smarter studies, accelerate discoveries, and move us closer to effective treatments.

ftdregistry.org

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

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...

ftdregistry.org

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...

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

Learn how biomarkers help improve diagnosis, guide treatment, and advance research in FTD. Join AFTD, the FTD Disorders Registry, and Dr. Charlotte Teunissen for a free webinar on March 10 at 10 am ET that breaks it all down. 🔴 Sponsored by AviadoBio 👉 Register now: https://bit.ly/45RGKg5

We are saddened by the passing of Rev. Jesse Jackson, whose family shared he lived with PSP, a rare FTD-related disorder. We extend our condolences to his loved ones and remain committed to advancing urgently needed FTD research.