FTD Disorders Registry
@ftdregistry.bsky.social
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
Reposted by FTD Disorders Registry
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
Register now: https://bit.ly/4rfNmOq
November 20, 2025 at 9:09 PM
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
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
#endFTD
November 18, 2025 at 4:34 PM
One drop can tell a story. Discover how biosamples are powering FTD research and how you can help: ftdregistry.org/press/what-w...
#endFTD
#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...
ftdregistry.org/quick-questi...
November 17, 2025 at 3:00 PM
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...
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.
November 14, 2025 at 3:21 PM
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.
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
November 13, 2025 at 7:36 PM
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/
Learn more: www.theaftd.org/what-is-ftd/...
PSP research opportunities: ftdregistry.org/find-a-study/
November 13, 2025 at 1:24 PM
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/
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.
November 13, 2025 at 1:08 PM
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.
November 11, 2025 at 12:40 PM
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
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
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
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
Reposted by FTD Disorders Registry
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
October 30, 2025 at 3:49 PM
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
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
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
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
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
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
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
Each number represents someone looking for answers and contributing to discovery.
Learn more: ftdregistry.org/press/what-t...
#endFTD
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
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
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
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
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
Reposted by FTD Disorders Registry
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
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
October 13, 2025 at 7:18 PM
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
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
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
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
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
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
#NEALS #NEALS2025 #NEALSMtg
October 9, 2025 at 4:49 PM
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
#NEALS #NEALS2025 #NEALSMtg
What would make a treatment for FTD truly effective?
In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.
#endFTD
In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.
#endFTD
October 3, 2025 at 11:31 AM
What would make a treatment for FTD truly effective?
In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.
#endFTD
In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life.
#endFTD
Registry data helps researchers spot patterns, shape better studies, and move us closer to treatments for FTD. Every participant makes a difference.
Read more: ftdregistry.org/press/the-ro...
#FTD #EndFTD #FTDResearch
Read more: ftdregistry.org/press/the-ro...
#FTD #EndFTD #FTDResearch
The Road Ahead: How Registry Data Can Drive Breakthroughs - FTD Disorders Registry
Progress is possible. See how Registry data can unlock breakthroughs in FTD research just as new treatments are showing progress in other neurological disorders.
ftdregistry.org
September 30, 2025 at 1:05 PM
Registry data helps researchers spot patterns, shape better studies, and move us closer to treatments for FTD. Every participant makes a difference.
Read more: ftdregistry.org/press/the-ro...
#FTD #EndFTD #FTDResearch
Read more: ftdregistry.org/press/the-ro...
#FTD #EndFTD #FTDResearch
FTD is genetic in about 20% of cases. Yet only 23.3% of people diagnosed and 12.4% of relatives have had genetic testing. Learn why this matters: ftdregistry.org/press/what-r...
#endFTD #WorldFTDAwarenessWeek #FTD #Genetics
#endFTD #WorldFTDAwarenessWeek #FTD #Genetics
September 27, 2025 at 2:46 PM
FTD is genetic in about 20% of cases. Yet only 23.3% of people diagnosed and 12.4% of relatives have had genetic testing. Learn why this matters: ftdregistry.org/press/what-r...
#endFTD #WorldFTDAwarenessWeek #FTD #Genetics
#endFTD #WorldFTDAwarenessWeek #FTD #Genetics
During World FTD Awareness Week, we recognize the challenges care partners face. The daily demands of FTD can make research participation difficult, yet their voices are essential to progress.
Learn more: ftdregistry.org/press/how-ca...
#WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness
Learn more: ftdregistry.org/press/how-ca...
#WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness
September 26, 2025 at 12:53 PM
During World FTD Awareness Week, we recognize the challenges care partners face. The daily demands of FTD can make research participation difficult, yet their voices are essential to progress.
Learn more: ftdregistry.org/press/how-ca...
#WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness
Learn more: ftdregistry.org/press/how-ca...
#WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness
FTD impacts more than health. It strains finances. Care partners say the top job effects are retiring early, cutting hours permanently, or cutting them temporarily.
Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi...
#WorldFTDAwarenessWeek #EndFTD
Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi...
#WorldFTDAwarenessWeek #EndFTD
September 26, 2025 at 12:07 PM
FTD impacts more than health. It strains finances. Care partners say the top job effects are retiring early, cutting hours permanently, or cutting them temporarily.
Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi...
#WorldFTDAwarenessWeek #EndFTD
Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi...
#WorldFTDAwarenessWeek #EndFTD
FTD impacts care partners too with stress, lost income & financial strain.
At #AAIC25, the FTD Disorders Registry showed how misdiagnosis & delays deepen that burden: ftdregistry.org/press/regist...
This #WorldFTDAwarenessWeek, let’s honor care partners & push for faster diagnoses.
At #AAIC25, the FTD Disorders Registry showed how misdiagnosis & delays deepen that burden: ftdregistry.org/press/regist...
This #WorldFTDAwarenessWeek, let’s honor care partners & push for faster diagnoses.
September 25, 2025 at 3:49 PM
FTD impacts care partners too with stress, lost income & financial strain.
At #AAIC25, the FTD Disorders Registry showed how misdiagnosis & delays deepen that burden: ftdregistry.org/press/regist...
This #WorldFTDAwarenessWeek, let’s honor care partners & push for faster diagnoses.
At #AAIC25, the FTD Disorders Registry showed how misdiagnosis & delays deepen that burden: ftdregistry.org/press/regist...
This #WorldFTDAwarenessWeek, let’s honor care partners & push for faster diagnoses.
FTD can steal your words, your connection, your voice. Join the FTD Disorders Registry to help researchers find treatments and a cure. www.FTDRegistry.org
#endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch
#endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch
September 24, 2025 at 12:24 PM
FTD can steal your words, your connection, your voice. Join the FTD Disorders Registry to help researchers find treatments and a cure. www.FTDRegistry.org
#endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch
#endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch
FTD disorders can make someone seem like a stranger to their loved ones.
Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org
#WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch
Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org
#WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch
September 23, 2025 at 11:36 AM
FTD disorders can make someone seem like a stranger to their loved ones.
Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org
#WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch
Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org
#WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch