FTD Disorders Registry

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

On #GivingTuesday, we’re grateful to @theaftd.bsky.social & The Bluefield Project, whose support makes the Registry possible.

Please consider supporting these organizations driving progress to #endFTD.

AFTD: www.theaftd.org/get-involved...
Bluefield Project: www.bluefieldproject.org/donate/

Promotional image for a webinar titled "FTD Research 2025: Paving the Path Towards Effective Treatments" scheduled for December 10, 2025, featuring Penny Dacks, AFTD Chief Scientific Officer and FTD Disorders Registry President, and Chiadi Onyike, AFTD's Medical Advisory Council Chair and Johns Hopkins University's Frontotemporal Dementia and Young-Onset Dementias Clinic Director. Sponsored by Passage Bio.

Join us for an inside look at the progress shaping FTD research. On 12/10 at 3 pm, AFTD experts Dr. Penny D. and Dr. Chiadi O. will discuss advancements from 2025 & the momentum driving us toward effective treatments in the years ahead. Sponsored by Passage Bio

Register now: https://bit.ly/4rfNmOq

One drop can tell a story. Discover how biosamples are powering FTD research and how you can help: ftdregistry.org/press/what-w...
#endFTD

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...

Carrie Milliard, MS, CGC, CCRC and Esther Kane, MSN, RN-CDP are back representing the FTD Disorders Registry and @theaftd.bsky.social at #GSA2025. Come visit us at Booth #201.

A photo of the AFTD and FTD Disorders Registry team members in front of the scientific poster at GSA2025.

The FTD Disorders Registry and @theaftd.bsky.social are presenting data on the FTD diagnostic experience and impact on families at the @geronsociety.bsky.social Annual Scientific Meeting this week. If you are attending, please come visit us at Booth #201. #GSA2025

Rev. Jesse Jackson’s hospitalization has brought attention to #PSP, an FTD subtype that affects movement, balance, and eye control. Early symptoms often mimic Parkinson’s.

Learn more: www.theaftd.org/what-is-ftd/...

PSP research opportunities: ftdregistry.org/find-a-study/

Today we honor the genetic counselors who guide families through FTD genetics with clarity and compassion. Their work directly supports the mission of the FTD Disorders Registry to build a strong, informed, research-ready community.

As we honor Veterans today, we also recognize ongoing efforts to better understand and support Veterans impacted by FTD. Research continues to expand, and your participation and experiences guide that progress.

FTD Research Roundup: What’s New This Fall - FTD Disorders Registry The Fall Research Roundup highlights new studies now enrolling people living with FTD, care partners, and biological family members.

New FTD studies are now recruiting.

See this season’s Fall Research Roundup to learn how you can help move FTD science forward: ftdregistry.org/press/ftd-re...

#endFTD #Research #NumbersHavePower

Promotional banner for Alector Clinical Trial Results Townhall on Thursday, November 6, 2025, at 3:00 p.m. ET, featuring Carmela Tartaglia and Penny Dacks from The Association for Frontotemporal Degeneration. Includes headshots and titles of the speakers.

Results from Alector Therapeutics’ Phase 3 trial for Latozinemab (AL001), designed for people with FTD caused by GRN variants, have raised important questions for many. Join us on Nov. 6 for a live discussion about what these results mean and what’s next for FTD research: https://bit.ly/3Lw3Sco

Registry Data Presented at the NEALS Consortium - FTD Disorders Registry Registry data is helping to bridge the gap between the FTD and ALS research communities and to accelerate recruitment for future clinical trials.

Data were shared at the NEALS Consortium Annual Meeting by Registry Director Carrie Milliard, showing how the Registry helps bridge FTD and ALS research and speed up clinical trial recruitment.

ftdregistry.org/press/regist...

#FTD #ALS #C9orf72 #ClinicalResearch #NumbersHavePower

What are Registry participants most interested in?

Each number represents someone looking for answers and contributing to discovery.

Learn more: ftdregistry.org/press/what-t...

#endFTD

Alector Announces Results from Phase 3 INFRONT-3 Trial of Latozinemab for FTD-GRN - FTD Disorders Registry Alector has announced topline results from its Phase 3 INFRONT-3 trial of latozinemab for FTD-GRN.

Alector has announced results from its Phase 3 trial of latozinemab (AL001) for FTD-GRN. While the study did not meet its goals, it offers insight that will guide future FTD research. Thank you to all who participated and continue to advance FTD research. Learn more: ftdregistry.org/press/alecto...

The 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

Webinar announcement from AFTD, titled 'Talking to Family About Genetic FTD Risk' set for October 20, 2025, at 3:00 p.m. ET. Features speakers Angela Lunde, Ansel Dow, and Wanda Smith. Image displays a family seated around a dining table in a well-lit room, engaged in conversation.

How do you talk to family about the genetic risks of FTD?

On 10/20 at 3 pm, AFTD will host a webinar featuring community members Wanda Smith and Ansel Dow, who will share their experiences. Angela Lunde, from Mayo Clinic, will provide practical tools and strategies. Sign up: https://bit.ly/46TyMUh

Living with FTD or caring for someone who does can bring emotional challenges that often go unseen.

This #WorldMentalHealthDay, remember: your well-being matters. You are not alone.

Find support through @theaftd.bsky.social: theaftd.org

Learn more at ftdregistry.org

#EndFTD