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.ftdregistry.org/press/how-to-find-clinic...

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: 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...

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...

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.

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...

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

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

Webinar announcement for "Introduction to Frontotemporal Dementia (FTD) Biomarkers" on March 10, 2026, from 10:00-11:00 am ET. Organized by AFTD and the FTD Disorders Registry. Sponsored by AviadoBio. The speaker is Dr. Charlotte Teunissen, PhD, Professor of Neurochemistry at Amsterdam University Medical Center.

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.

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

Prevail Therapeutics PR006 Trial Discontinued - FTD Disorders Registry While the PR006 program has been discontinued, research into FTD continues. Here’s what this update means for the community and the path forward.

Prevail Therapeutics has discontinued PR006 for progranulin-related FTD (GRN-FTD).

While disappointing, each study helps us learn and move FTD research forward. Thank you to the researchers, participants & families who made this work possible. Read more: ftdregistry.org/press/prevai...

Amyotrophic lateral sclerosis (#ALS) and frontotemporal dementia (#FTD) have many things in common. Research on one disease often leads to relevant data that could help treat or cure others. #CureOneCureMany

Holloway Summit 2026 photo featuring AFTD's Holloway Scholars

These early-career researchers were recently selected as AFTD’s Holloway Scholars and invited to attend the #2026HollowaySummit due to their impactful work in FTD diagnostics.

Their travel was generously supported by the Holloway Family Fund – we are thankful for their continued commitment to FTD!

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

What Makes a Registry "Research Ready"? - FTD Disorders Registry What does it really mean for an FTD registry to be research ready, and why does community participation matter so much?

You may hear the phrase “research ready,” but what does it really mean? Learn how being part of the Registry helps demonstrate that the FTD community is ready to support research: ftdregistry.org/press/what-m...

Promotional graphic for a healthcare professional webinar titled 'Neurodegenerative Disease Biomarkers: What can they tell us about FTD?' hosted by AFTD, scheduled for Friday, February 13, 2026, from 12-1 p.m., with CME credit available. The image features the event details and three speaker photos with their names and titles: Howard Rosen, MD, Professor for Parkinsonian and Other Neurodegenerative Disorders at the Weill Institute for Neuroscience in UCSF’s Department of Neurology; Simon Ducharme, MD, FRCP, Neuropsychiatrist and a clinician-scientist at the Douglas Mental Health University Institute and the Montreal Neurological Institute; Sami Barmada, MD, PhD, Director of the Brain Bank and Associate Director of the Medical Scientist Training Program at the University of Michigan

What can biomarkers tell us about FTD?

Healthcare professionals: Join us Friday, Feb. 13, for a live webinar exploring how new imaging and blood-based biomarker tools like P-Tau, NFL, and GFAP are shaping the future of dementia diagnosis.

🔴 Earn CME credit.
🔗 Register now: https://bit.ly/45v8N4C

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

This Christmas, we’re thinking of everyone in the FTD community. Thank you for supporting the FTD Disorders Registry and helping advance research. Wishing peace and comfort to all who celebrate.

The FTD Disorders Registry was recently featured at #CTAD2025 in San Diego! Dr. Shana Dodge presented a poster showing how the Registry is helping accelerate clinical trial recruitment.

Read more: ftdregistry.org/press/ftd-di...

Each month, the FTD Disorders Registry invites our community to answer one quick question. Add your voice today and see how others responded to last month’s question: ftdregistry.org/quick-questi...

Wishing a warm and meaningful Hanukkah to those who celebrate. May the Festival of Lights bring light and hope. We are grateful for our Registry community. Chag Sameach!

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