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.orghttps://bsky.app/profile/ftdregistry.bsky.socialhttps://bsky.app/profile/ftdregistry.bsky.social/post/3mvlgsymdnc2cBehavioral 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: https://ftdregistry.org/quick-question-september-2026/ #FTDResearch #endFTD15 Sep 2026 20:14 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mvlgsymdnc2chttps://bsky.app/profile/ftdregistry.bsky.social/post/3mvinfpw3cc2qWorld 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 #endFTD14 Sep 2026 17:34 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mvinfpw3cc2qhttps://bsky.app/profile/ftdregistry.bsky.social/post/3mv4fwmqe3k2pDo 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 #FTDresearch09 Sep 2026 20:48 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mv4fwmqe3k2phttps://bsky.app/profile/ftdregistry.bsky.social/post/3mupadjni522fCaregivers 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: https://isftd2026.org/caregivers-day/program/ #endFTD #FTD #FTDResearch04 Sep 2026 15:03 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mupadjni522fhttps://bsky.app/profile/ftdregistry.bsky.social/post/3munnudqosk2kThere’s no one right way to participate in #FTDresearch. Learn more about the different options and find what works for you and your family. https://ftdregistry.org/press/understanding-the-different-ways-to-participate-in-ftd-research/ #FTDRegistry #endFTD04 Sep 2026 00:00 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3munnudqosk2khttps://bsky.app/profile/ftdregistry.bsky.social/post/3mu5d7y5ybk2gYou 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: https://ftdregistry.org/press/who-has-a-role-in-the-ftd-disorders-registry/ #endFTD28 Aug 2026 12:07 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mu5d7y5ybk2ghttps://bsky.app/profile/ftdregistry.bsky.social/post/3mu3la2xgps2gWhen someone is diagnosed with FTD, families often ask what comes next. The FTD Disorders Registry is a valuable resource to share early. Learn more: https://ftdregistry.org/for-healthcare-professionals/ #FTDResearch #FTDRegistry #endFTD #frontotemporaldegeneration27 Aug 2026 19:25 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mu3la2xgps2ghttps://bsky.app/profile/ftdregistry.bsky.social/post/3mtw3zenujs25A 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: https://ftdregistry.org/press/a-new-approach-to-psp-research-understanding-the-psp-trial-platform/25 Aug 2026 15:09 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mtw3zenujs25https://bsky.app/profile/ftdregistry.bsky.social/post/3mtthhzwgts26Genetic 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: https://ftdregistry.org/press/why-your-familys-story-matters-the-power-of-genetic-counseling-and-genetic-testing-in-ftd-disorders/24 Aug 2026 13:56 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mtthhzwgts26https://bsky.app/profile/ftdregistry.bsky.social/post/3mtjafnj4ck26Recruiting 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 #FTDRegistry20 Aug 2026 12:23 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mtjafnj4ck26https://bsky.app/profile/ftdregistry.bsky.social/post/3mtgum6uons2rFTD 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 #FTDResearch19 Aug 2026 13:47 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mtgum6uons2rhttps://bsky.app/profile/ftdregistry.bsky.social/post/3mteffa3zks2rFTD 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: https://ftdregistry.org/press/who-has-a-role-in-the-ftd-disorders-registry/18 Aug 2026 14:09 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mteffa3zks2rhttps://bsky.app/profile/ftdregistry.bsky.social/post/3mrxb2nwt422xLast 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.org31 Jul 2026 15:22 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mrxb2nwt422xhttps://bsky.app/profile/ftdregistry.bsky.social/post/3mrmt7oolvk2iIt’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.org27 Jul 2026 11:48 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mrmt7oolvk2ihttps://bsky.app/profile/ftdregistry.bsky.social/post/3mrcs6ybcc22tThe 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: https://ftdregistry.org/press/ftd-disorders-registry-highlights-research-at-aaic-2026/ #endFTD23 Jul 2026 12:03 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mrcs6ybcc22thttps://bsky.app/profile/ftdregistry.bsky.social/post/3mr5rwpfaqc2iEvery 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 #frontotemporaldegeneration21 Jul 2026 12:15 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mr5rwpfaqc2ihttps://bsky.app/profile/ftdregistry.bsky.social/post/3mqlyfqalwk24FTD 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 #AAIC2614 Jul 2026 10:23 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mqlyfqalwk24https://bsky.app/profile/ftdregistry.bsky.social/post/3mqaiurodkk2dHeaded 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!09 Jul 2026 20:45 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mqaiurodkk2dhttps://bsky.app/profile/ftdregistry.bsky.social/post/3mq7ubmuv3s2aYou 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 #endFTD09 Jul 2026 14:37 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mq7ubmuv3s2ahttps://bsky.app/profile/ftdregistry.bsky.social/post/3mpyswnc34k2iResearchers look at enrollment numbers. Your participation can help show that the FTD community is ready for research. www.ftdregistry.org06 Jul 2026 19:24 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mpyswnc34k2ihttps://bsky.app/profile/ftdregistry.bsky.social/post/3mplkjvhdhk2iFTD research needs a strong, research-ready community. Everyone is eligible to join the FTD Disorders Registry. Join in July and help advance the science: https://ftdregistry.org/press/join-in-july-help-grow-a-research-ready-community/ #FTDResearch #FTD #JoininJuly #ResearchReady01 Jul 2026 12:49 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mplkjvhdhk2ihttps://bsky.app/profile/ftdregistry.bsky.social/post/3mnzqat3vqc2gWhat does “deidentified data” really mean? Learn how shared information can help advance FTD research while protecting participant privacy. Read more: https://ftdregistry.org/press/what-deidentified-data-really-means/ #FTDResearch #FTDRegistry11 Jun 2026 17:18 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mnzqat3vqc2ghttps://bsky.app/profile/ftdregistry.bsky.social/post/3mnhnfaz74k2oThe 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: https://ftdregistry.org/press/the-future-of-collaborative-research-in-frontotemporal-degeneration/04 Jun 2026 12:39 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mnhnfaz74k2ohttps://bsky.app/profile/ftdregistry.bsky.social/post/3mmclr33ms22kThe 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: https://ucsf.zoom.us/webinar/register/WN_X38ZmRRfQ6eico592d9nqw20 May 2026 19:01 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mmclr33ms22khttps://bsky.app/profile/ftdregistry.bsky.social/post/3mlogezswpc2xWant to help move FTD research forward? Follow these tips to stay research ready: https://ftdregistry.org/press/stay-research-ready-four-simple-ways-to-support-ftd-research/12 May 2026 18:32 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mlogezswpc2xhttps://bsky.app/profile/ftdregistry.bsky.social/post/3mkkuq6d2xs2oBecause 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.org28 Apr 2026 15:13 +0000at://did:plc:5dwro55stwstweczeuvwfus3/app.bsky.feed.post/3mkkuq6d2xs2o