iiinova — where your digital self keeps evolving

FTD Disorders Registry @ftdregistry.bsky.social · 16h

For World FTD Awareness Week, we’re putting a Spotlight on Participants. FTD research cannot move forward without people who take part. Every participant adds to what we can learn. Numbers Have Power. ftdregistry.org #spotlightFTD #endFTD #FTDResearch

020

FTD Disorders Registry @ftdregistry.bsky.social · 30/09/2026

For World FTD Awareness Week, we’re putting a Spotlight on FTD Research. Participants, families, researchers, clinicians, data and collaboration all help move research forward. ftdregistry.org/press/what-d... #spotlightFTD #endFTD #FTDResearch

022

FTD Disorders Registry @ftdregistry.bsky.social · 29/09/2026

For World FTD Awareness Week, we’re putting a Spotlight on the FTD Disorders Registry. Numbers Have Power. Because FTD is rare, every participant matters. Learn more or join: www.ftdregistry.org #spotlightFTD #endFTD

121

Reposted by FTD Disorders Registry

Penn FTD Center @pennftdc.bsky.social · 28/09/2026

In honor of FTD Awareness Week, we are putting patients in the spotlight. From our Co-Director David Irwin, MD, we want to acknowledge the determination and perseverance of patients and the inspiration you bring to providers to bring all closer to a cure. #spotlightFTD #endFTD

073

FTD Disorders Registry @ftdregistry.bsky.social · 24/09/2026

Collaboration is key to moving FTD research forward! We joined our @theaftd.bsky.social colleagues at the FTD Research Roundtable for important conversations about the future of FTD research. Thank you to AFTD for bringing the FTD research community together! #FTDResearch #endFTD

020

FTD Disorders Registry @ftdregistry.bsky.social · 24/09/2026

The @theaftd.bsky.social FTD Research Roundtable continues today! FTD Disorders Registry President Penny Dacks, PhD, is participating in discussions focused on biomarker strategies for FTD clinical trials and the challenges and opportunities facing FTD research. #FTDResearch #endFTD

010

FTD Disorders Registry @ftdregistry.bsky.social · 23/09/2026

Carrie Milliard, MS, CGC, CCRC, Director of the FTD Disorders Registry, is at @theaftd.bsky.social's Research Roundtable this week, sharing how the Registry is helping build a research-ready community and move FTD research forward. #FTDResearch #FrontotemporalDegeneration #endFTD

010

FTD Disorders Registry @ftdregistry.bsky.social · 22/09/2026

Why is recruiting participants for rare disease research so challenging? Read about the challenges of rare disease research recruitment and how we can help address them: ftdregistry.org/press/why-ra... #endFTD #FrontotemporalDegeneration #RareDiseaseResearch #FTDResearch

010

FTD Disorders Registry @ftdregistry.bsky.social · 19/09/2026

Are you participating in @theaftd.bsky.social's Walk for FTD in Des Moines today? Stop by and say hi to Quinn at the FTD Disorders Registry booth! #endFTD #WalkforFTD

000

FTD Disorders Registry @ftdregistry.bsky.social · 18/09/2026

FTD research doesn’t move forward because of one study, one researcher, or one dataset. It takes participants, families, clinicians, researchers, data, all working together. See how the FTD Disorders Registry helps support that work. ftdregistry.org/press/what-d... #endFTD #FTDResearch

001

FTD Disorders Registry @ftdregistry.bsky.social · 15/09/2026

Behavioral changes can be challenging for people living with FTD and those who support them. This month’s Quick Question asks about these changes and how confident you feel managing them. Share your perspective: ftdregistry.org/quick-questi... #FTDResearch #endFTD

010

Reposted by FTD Disorders Registry

Penn FTD Center @pennftdc.bsky.social · 15/09/2026

Penn FTDC's Dahlia Kamel, MS collaborated on a paper to explore Clinical Research Coordinator's influence on the research participant experience, including training adequacy, job satisfaction, retention, and much more. Read the paper below! www.frontiersin.org/journals/neu...

frontiersin.org

Frontiers | Supporting frontline staff in frontotemporal degeneration research

IntroductionClinical Research Coordinators (CRCs) serve as the frontline staff for research participants in studies on frontotemporal degeneration (FTD), dir...

021

FTD Disorders Registry @ftdregistry.bsky.social · 14/09/2026

World FTD Awareness Week is coming Sept 28–Oct 4. This year, we’re putting a Spotlight on FTD and on the people, families, researchers, clinicians & advocates helping move understanding and research forward. Learn more and get involved: www.worldftdunited.net/awareness2026 #spotlightFTD #endFTD

020

Reposted by FTD Disorders Registry

Penn FTD Center @pennftdc.bsky.social · 14/09/2026

In bvFTD, we found that the spatial relationship between neurodegeneration and a neurotransmitter receptor was associated with disease severity and cognition. Read the paper from Penn FTDC's Melanie Matyi, PhD below! direct.mit.edu/imag/article...

direct.mit.edu

Spatial covariance of mGluR5 density and structural degeneration in behavioral variant frontotemporal degeneration

Abstract. Post-mortem human brain tissue and in vivo imaging studies of behavioral variant frontotemporal degeneration (bvFTD) suggest that metabotropic glutamate receptors (mGluR) may be vulnerable t...

021

FTD Disorders Registry @ftdregistry.bsky.social · 09/09/2026

Do you need an FTD diagnosis to join the FTD Disorders Registry? No. The Registry is open to anyone interested in frontotemporal degeneration research, including people diagnosed, family members, care partners, healthcare providers and others. Learn more: www.FTDRegistry.org #endFTD #FTDresearch

Registry FAQs

Do you need an FTD diagnosis to join the FTD Disorders Registry?

No. You do not need an FTD diagnosis to join the Registry.

The Registry is open to anyone interested in frontotemporal degeneration research, including people diagnosed, family members, care partners, healthcare providers and others who want to stay connected to research opportunities.

www.FTDRegistry.org
Numbers have power. Join the Registry. Advance the science.

000

Reposted by FTD Disorders Registry

Penn FTD Center @pennftdc.bsky.social · 09/09/2026

Caregivers are invited to join us for Caregivers Day at ISFTD 2026 on Friday, October 9 in Philadelphia. This one-day conference features expert-led sessions on FTD care, the latest research advances, symptom management, advocacy, and more. Register now at the link in our bio!

011

FTD Disorders Registry @ftdregistry.bsky.social · 04/09/2026

Caregivers have an opportunity to hear directly about advances in FTD research & new approaches to care at Caregivers Day during #ISFTD2026. Date: Friday, Oct. 9, 2026 Location: Philadelphia, PA View the program and register: isftd2026.org/caregivers-d... #endFTD #FTD #FTDResearch

000

FTD Disorders Registry @ftdregistry.bsky.social · 04/09/2026

There’s no one right way to participate in #FTDresearch. Learn more about the different options and find what works for you and your family. ftdregistry.org/press/unders... #FTDRegistry #endFTD

010

Reposted by FTD Disorders Registry

Penn FTD Center @pennftdc.bsky.social · 27/08/2026

Neuropsychologist & Assistant Professor at the Penn FTD Center Emma Rhodes was featured in an article with AlzForum to highlight her AAIC 2026 poster. Check out the article below! www.alzforum.org/news/confere...

alzforum.org

Better Never Than LATE: TDP-43 Pathology in Alzheimer's Disease | ALZFORUM

011

FTD Disorders Registry @ftdregistry.bsky.social · 28/08/2026

You don’t need to have an FTD diagnosis to make a difference in FTD research. Biological family members and those with a genetic link can play an important role by joining the FTD Disorders Registry. Learn more and join: ftdregistry.org/press/who-ha... #endFTD

010

FTD Disorders Registry @ftdregistry.bsky.social · 27/08/2026

When someone is diagnosed with FTD, families often ask what comes next. The FTD Disorders Registry is a valuable resource to share early. Learn more: ftdregistry.org/for-healthca... #FTDResearch #FTDRegistry #endFTD #frontotemporaldegeneration

000

FTD Disorders Registry @ftdregistry.bsky.social · 25/08/2026

A new approach to PSP research is underway. Learn how the PSP Trial Platform is designed to study multiple potential treatments within one shared clinical trial framework. Learn more: ftdregistry.org/press/a-new-...

000

FTD Disorders Registry @ftdregistry.bsky.social · 24/08/2026

Genetic information can help advance FTD research. Registry participants can share genetic test results, helping researchers better understand FTD and identify potential study matches. Learn more: ftdregistry.org/press/why-yo...

020

FTD Disorders Registry @ftdregistry.bsky.social · 20/08/2026

Recruiting for FTD research? The FTD Disorders Registry can help researchers better understand potential study populations and support recruitment for approved studies. Learn more at www.FTDRegistry.org #endFTD #FTDResearch #frontotemporaldegeneration #FTDRegistry

000

FTD Disorders Registry @ftdregistry.bsky.social · 19/08/2026

FTD is rare. That means every research participant can make a difference. By sharing their experience, participants help researchers build a stronger picture of FTD and support future studies. Learn more: ftdregistry.org #endFTD #FTDResearch

010

FTD Disorders Registry @ftdregistry.bsky.social · 18/08/2026

FTD research needs more than people diagnosed with FTD. Biological family members, care partners, LARs, clinicians, and researchers all have a role to play. See how each contributes to the FTD Disorders Registry: ftdregistry.org/press/who-ha...

000

FTD Disorders Registry @ftdregistry.bsky.social · 31/07/2026

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

010

FTD Disorders Registry @ftdregistry.bsky.social · 27/07/2026

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

011

FTD Disorders Registry @ftdregistry.bsky.social · 23/07/2026

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

010

FTD Disorders Registry @ftdregistry.bsky.social · 21/07/2026

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

000

FTD Disorders Registry @ftdregistry.bsky.social · 14/07/2026

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

000

FTD Disorders Registry @ftdregistry.bsky.social · 09/07/2026

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!

010

FTD Disorders Registry @ftdregistry.bsky.social · 09/07/2026

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

Your participation makes a difference.
Anyone with an interest in FTD research can join the FTD Disorders Registry.
Eligible adults in the US and Canada may also participate in the Registry Research Study.
Your information is kept safe and confidential.
Your participation helps researchers today and for generations to come.
www.FTDregistry.org

031

FTD Disorders Registry @ftdregistry.bsky.social · 06/07/2026

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

020

FTD Disorders Registry @ftdregistry.bsky.social · 01/07/2026

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

010

FTD Disorders Registry @ftdregistry.bsky.social · 11/06/2026

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

000

FTD Disorders Registry @ftdregistry.bsky.social · 04/06/2026

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...

010

FTD Disorders Registry @ftdregistry.bsky.social · 20/05/2026

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...

010

FTD Disorders Registry @ftdregistry.bsky.social · 12/05/2026

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

010

FTD Disorders Registry @ftdregistry.bsky.social · 28/04/2026

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

010

FTD Disorders Registry @ftdregistry.bsky.social · 17/04/2026

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...

000

FTD Disorders Registry @ftdregistry.bsky.social · 15/04/2026

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/

010

FTD Disorders Registry @ftdregistry.bsky.social · 14/04/2026

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...

010

FTD Disorders Registry @ftdregistry.bsky.social · 05/04/2026

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.

000

FTD Disorders Registry @ftdregistry.bsky.social · 02/04/2026

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.

011

FTD Disorders Registry @ftdregistry.bsky.social · 31/03/2026

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

021

FTD Disorders Registry @ftdregistry.bsky.social · 19/03/2026

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

010

FTD Disorders Registry @ftdregistry.bsky.social · 13/03/2026

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.

012

FTD Disorders Registry @ftdregistry.bsky.social · 11/03/2026

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...

010