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ftdregistry.bsky.social
FTD Disorders Registry
@ftdregistry.bsky.social
100 followers 210 following 96 posts
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure for frontotemporal degeneration. Numbers have power. Join the Registry. Advance the science. #EndFTD www.ftdregistry.org
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ftdregistry.bsky.social
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
Strengthening FTD Research with CureGRN - FTD Disorders Registry
Progress toward an FTD cure depends on communities and researchers working together.
ftdregistry.org
January 21, 2026 at 8:26 PM
ftdregistry.bsky.social
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
January 2, 2026 at 2:35 PM
ftdregistry.bsky.social
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.
December 24, 2025 at 12:48 PM
ftdregistry.bsky.social
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...
December 19, 2025 at 4:01 PM
ftdregistry.bsky.social
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...
December 16, 2025 at 5:52 PM
ftdregistry.bsky.social
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!
December 15, 2025 at 4:45 PM
ftdregistry.bsky.social
Attending #CTAD2025 this week? Stop by our poster P407 to learn more about the FTD Disorders Registry. #endFTD
December 4, 2025 at 3:52 PM
ftdregistry.bsky.social
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/
December 2, 2025 at 4:22 PM
Reposted by FTD Disorders Registry
theaftd.bsky.social
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
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.
November 20, 2025 at 9:09 PM
ftdregistry.bsky.social
One drop can tell a story. Discover how biosamples are powering FTD research and how you can help: ftdregistry.org/press/what-w...
#endFTD
November 18, 2025 at 4:34 PM
ftdregistry.bsky.social
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...
November 17, 2025 at 3:00 PM
ftdregistry.bsky.social
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.
November 14, 2025 at 3:21 PM
ftdregistry.bsky.social
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
A photo of the AFTD and FTD Disorders Registry team members in front of the scientific poster at GSA2025.
November 13, 2025 at 7:36 PM
ftdregistry.bsky.social
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/
November 13, 2025 at 1:24 PM
ftdregistry.bsky.social
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.
November 13, 2025 at 1:08 PM
ftdregistry.bsky.social
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.
November 11, 2025 at 12:40 PM
ftdregistry.bsky.social
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
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.
ftdregistry.org
November 4, 2025 at 12:55 PM
Reposted by FTD Disorders Registry
theaftd.bsky.social
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
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.
October 30, 2025 at 3:49 PM
ftdregistry.bsky.social
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
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.
ftdregistry.org
October 30, 2025 at 9:44 PM
ftdregistry.bsky.social
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
October 23, 2025 at 1:59 PM
ftdregistry.bsky.social
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...
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.
ftdregistry.org
October 22, 2025 at 4:51 PM
ftdregistry.bsky.social
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
October 16, 2025 at 12:57 PM
Reposted by FTD Disorders Registry
theaftd.bsky.social
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
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.
October 13, 2025 at 7:18 PM
ftdregistry.bsky.social
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
October 10, 2025 at 12:03 PM
ftdregistry.bsky.social
FTD Disorders Registry Director Carrie Milliard and @theaftd.bsky.social's Amanda Gleixner joined the NEALS Consortium Annual Meeting, raising awareness of FTD and connecting with the ALS community to advance research, collaboration, and hope.

#NEALS #NEALS2025 #NEALSMtg
October 9, 2025 at 4:49 PM