@ftdregistry
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
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...
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 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 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
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
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.
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
