The Association For Frontotemporal Degeneration
@theaftd.bsky.social
AFTD envisions a world with compassionate care, effective support, and a future free of Frontotemporal Degeneration (FTD). #EndFTD
https://www.theaftd.org/
https://www.theaftd.org/
In our last fiscal year, we paved a path forward - raising FTD awareness, driving research, supporting people and families, educating healthcare professionals, and leading advocacy efforts.
🔴 Read more and explore stories from our community in our 2025 Impact Report: https://bit.ly/49pAsqz
🔴 Read more and explore stories from our community in our 2025 Impact Report: https://bit.ly/49pAsqz
November 21, 2025 at 7:18 PM
In our last fiscal year, we paved a path forward - raising FTD awareness, driving research, supporting people and families, educating healthcare professionals, and leading advocacy efforts.
🔴 Read more and explore stories from our community in our 2025 Impact Report: https://bit.ly/49pAsqz
🔴 Read more and explore stories from our community in our 2025 Impact Report: https://bit.ly/49pAsqz
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
Caring for someone with FTD can be deeply meaningful, but it can also be stressful. Taking time to care for yourself helps you show up stronger for those you love. ❤️
Explore ways to manage stress, like joining a support group, journaling, or asking for help. Learn more: https://bit.ly/441AUYl
Explore ways to manage stress, like joining a support group, journaling, or asking for help. Learn more: https://bit.ly/441AUYl
November 20, 2025 at 4:10 PM
Caring for someone with FTD can be deeply meaningful, but it can also be stressful. Taking time to care for yourself helps you show up stronger for those you love. ❤️
Explore ways to manage stress, like joining a support group, journaling, or asking for help. Learn more: https://bit.ly/441AUYl
Explore ways to manage stress, like joining a support group, journaling, or asking for help. Learn more: https://bit.ly/441AUYl
A study led by AFTD grantee Dr. Tanav Popli finds high rates of diagnostic mismatching of #PSP cases in a national data set.
Click here to learn more: https://bit.ly/3JKIwYt
Click here to learn more: https://bit.ly/3JKIwYt
November 19, 2025 at 8:05 PM
A study led by AFTD grantee Dr. Tanav Popli finds high rates of diagnostic mismatching of #PSP cases in a national data set.
Click here to learn more: https://bit.ly/3JKIwYt
Click here to learn more: https://bit.ly/3JKIwYt
FTD is still too often misunderstood, even in healthcare, leaving families without the support they urgently need. In this clip, AFTD’s Meghan B. shares why your voice matters & how advocacy can transform the future for people living with FTD & their care partners.
Watch now: https://bit.ly/3WqDUcE
Watch now: https://bit.ly/3WqDUcE
November 19, 2025 at 5:10 PM
FTD is still too often misunderstood, even in healthcare, leaving families without the support they urgently need. In this clip, AFTD’s Meghan B. shares why your voice matters & how advocacy can transform the future for people living with FTD & their care partners.
Watch now: https://bit.ly/3WqDUcE
Watch now: https://bit.ly/3WqDUcE
Amylyx Pharmaceuticals announced that it is ending its phase 2b trial for #PSP after test group results turned out similarly to the placebo group. We’re grateful for Amylyx’s work furthering our understanding of PSP’s biology.
Learn more: https://bit.ly/43taApW
Learn more: https://bit.ly/43taApW
November 18, 2025 at 7:46 PM
Amylyx Pharmaceuticals announced that it is ending its phase 2b trial for #PSP after test group results turned out similarly to the placebo group. We’re grateful for Amylyx’s work furthering our understanding of PSP’s biology.
Learn more: https://bit.ly/43taApW
Learn more: https://bit.ly/43taApW
Holidays can feel different when FTD is part of the picture. These Thanksgiving tips can help create a calmer, more comfortable day for care partners, guests, & the persons diagnosed.
Looking for more tips? Join an AFTD support group to learn from others who truly understand: https://bit.ly/4i0XvtL
Looking for more tips? Join an AFTD support group to learn from others who truly understand: https://bit.ly/4i0XvtL
November 18, 2025 at 4:10 PM
Holidays can feel different when FTD is part of the picture. These Thanksgiving tips can help create a calmer, more comfortable day for care partners, guests, & the persons diagnosed.
Looking for more tips? Join an AFTD support group to learn from others who truly understand: https://bit.ly/4i0XvtL
Looking for more tips? Join an AFTD support group to learn from others who truly understand: https://bit.ly/4i0XvtL
This National Family Caregivers Month, AFTD honors caregivers like Aisha and offers understanding, guidance, and hope through our newly updated resource, Life After an FTD Diagnosis: What You Need to Know.
❤️ Click the link to download the booklet: https://bit.ly/3LD88qP
❤️ Click the link to download the booklet: https://bit.ly/3LD88qP
November 17, 2025 at 4:46 PM
This National Family Caregivers Month, AFTD honors caregivers like Aisha and offers understanding, guidance, and hope through our newly updated resource, Life After an FTD Diagnosis: What You Need to Know.
❤️ Click the link to download the booklet: https://bit.ly/3LD88qP
❤️ Click the link to download the booklet: https://bit.ly/3LD88qP
A Soho Sessions benefit concert for AFTD, held on November 5, honored Bruce Willis, currently living with an FTD diagnosis. In attendance were music legends, dear friends, and FTD advocates who all share a commitment to advancing progress toward an FTD-free future. Learn more: https://bit.ly/4oySRFV
November 16, 2025 at 6:41 PM
A Soho Sessions benefit concert for AFTD, held on November 5, honored Bruce Willis, currently living with an FTD diagnosis. In attendance were music legends, dear friends, and FTD advocates who all share a commitment to advancing progress toward an FTD-free future. Learn more: https://bit.ly/4oySRFV
What a race! ❤️🏃♀️🏃♂️
We’re filled with gratitude for everyone who joined The AFTD-Team at this year’s TCS NYC Marathon on November 2nd. Together, our runners raised an incredible $79,432 to advance AFTD’s mission.
Thank you to all the runners!
We’re filled with gratitude for everyone who joined The AFTD-Team at this year’s TCS NYC Marathon on November 2nd. Together, our runners raised an incredible $79,432 to advance AFTD’s mission.
Thank you to all the runners!
November 15, 2025 at 8:51 PM
What a race! ❤️🏃♀️🏃♂️
We’re filled with gratitude for everyone who joined The AFTD-Team at this year’s TCS NYC Marathon on November 2nd. Together, our runners raised an incredible $79,432 to advance AFTD’s mission.
Thank you to all the runners!
We’re filled with gratitude for everyone who joined The AFTD-Team at this year’s TCS NYC Marathon on November 2nd. Together, our runners raised an incredible $79,432 to advance AFTD’s mission.
Thank you to all the runners!
Civil rights icon Rev. Jesse Jackson has been diagnosed with progressive supranuclear palsy (PSP), a rare form of FTD he's been managing for over a decade.
🔴 Learn about his journey and this condition: https://bit.ly/4hZJqwW
🔴 Learn about his journey and this condition: https://bit.ly/4hZJqwW
November 13, 2025 at 9:12 PM
Civil rights icon Rev. Jesse Jackson has been diagnosed with progressive supranuclear palsy (PSP), a rare form of FTD he's been managing for over a decade.
🔴 Learn about his journey and this condition: https://bit.ly/4hZJqwW
🔴 Learn about his journey and this condition: https://bit.ly/4hZJqwW
Join AFTD’s Healthcare Professional Webinar on Nov. 18 at 12 p.m. ET, featuring Stephanie Muskat, MSW, RSW, to learn how individual therapy can offer meaningful support for FTD care partners.
🎓 Earn CEC credit.
🔗 Register now: https://bit.ly/42Tbiwk
🎓 Earn CEC credit.
🔗 Register now: https://bit.ly/42Tbiwk
November 10, 2025 at 5:13 PM
Join AFTD’s Healthcare Professional Webinar on Nov. 18 at 12 p.m. ET, featuring Stephanie Muskat, MSW, RSW, to learn how individual therapy can offer meaningful support for FTD care partners.
🎓 Earn CEC credit.
🔗 Register now: https://bit.ly/42Tbiwk
🎓 Earn CEC credit.
🔗 Register now: https://bit.ly/42Tbiwk
Caring for someone living with FTD can bring moments of connection and moments of exhaustion. It’s okay to ask for help.
This week’s Help & Hope highlights resources, respite options, and support networks designed to help care partners and caregivers find balance. Learn more: https://bit.ly/3XjpVFO
This week’s Help & Hope highlights resources, respite options, and support networks designed to help care partners and caregivers find balance. Learn more: https://bit.ly/3XjpVFO
November 8, 2025 at 6:56 PM
Caring for someone living with FTD can bring moments of connection and moments of exhaustion. It’s okay to ask for help.
This week’s Help & Hope highlights resources, respite options, and support networks designed to help care partners and caregivers find balance. Learn more: https://bit.ly/3XjpVFO
This week’s Help & Hope highlights resources, respite options, and support networks designed to help care partners and caregivers find balance. Learn more: https://bit.ly/3XjpVFO
Dawn K.'s daughter, Kara, was diagnosed with FTD at age 29. In a recent podcast, she shared her experience as a mother fighting for her daughter, her evolution as an FTD advocate, & her work with AFTD, & the importance of community support, perspective, & education. Read more: https://bit.ly/4hS51qX
November 6, 2025 at 4:10 PM
Dawn K.'s daughter, Kara, was diagnosed with FTD at age 29. In a recent podcast, she shared her experience as a mother fighting for her daughter, her evolution as an FTD advocate, & her work with AFTD, & the importance of community support, perspective, & education. Read more: https://bit.ly/4hS51qX
Join AFTD’s next Healthcare Professional Webinar on Nov. 18 to learn how individual therapy can help care partners navigate the unique emotional challenges of FTD caregiving. Led by Stephanie M., MSW, RSW, this session offers strategies, insights, & CEC credit. Register now: https://bit.ly/42Tbiwk
November 5, 2025 at 4:05 PM
Join AFTD’s next Healthcare Professional Webinar on Nov. 18 to learn how individual therapy can help care partners navigate the unique emotional challenges of FTD caregiving. Led by Stephanie M., MSW, RSW, this session offers strategies, insights, & CEC credit. Register now: https://bit.ly/42Tbiwk
🧠 FTD is a progressive disease.
Over time, symptoms of FTD become more pronounced, affecting behavior, language, movement, and daily life.
🔴 Learn more about what FTD is, its early signs, and how it progresses: https://bit.ly/4oGZzte
Over time, symptoms of FTD become more pronounced, affecting behavior, language, movement, and daily life.
🔴 Learn more about what FTD is, its early signs, and how it progresses: https://bit.ly/4oGZzte
November 4, 2025 at 6:19 PM
🧠 FTD is a progressive disease.
Over time, symptoms of FTD become more pronounced, affecting behavior, language, movement, and daily life.
🔴 Learn more about what FTD is, its early signs, and how it progresses: https://bit.ly/4oGZzte
Over time, symptoms of FTD become more pronounced, affecting behavior, language, movement, and daily life.
🔴 Learn more about what FTD is, its early signs, and how it progresses: https://bit.ly/4oGZzte
Helen-Ann Comstock’s courage and determination in caring for her husband, Craig, led her to start AFTD 23 years ago, creating vital support for caregivers and families facing FTD.
Helen-Ann passed away in July. ❤️ Honor her legacy today with a gift of $23: https://bit.ly/3JFdxwK
Helen-Ann passed away in July. ❤️ Honor her legacy today with a gift of $23: https://bit.ly/3JFdxwK
November 3, 2025 at 6:10 PM
Helen-Ann Comstock’s courage and determination in caring for her husband, Craig, led her to start AFTD 23 years ago, creating vital support for caregivers and families facing FTD.
Helen-Ann passed away in July. ❤️ Honor her legacy today with a gift of $23: https://bit.ly/3JFdxwK
Helen-Ann passed away in July. ❤️ Honor her legacy today with a gift of $23: https://bit.ly/3JFdxwK
Caregiving is a journey of countless brave steps, and every single one matters. ❤️
If you ever need support, information, or simply someone who understands, AFTD’s HelpLine is here to help.
📩 info@theaftd.org
📞 1-866-507-7222
#NationalFamilyCaregiversMonth
If you ever need support, information, or simply someone who understands, AFTD’s HelpLine is here to help.
📩 info@theaftd.org
📞 1-866-507-7222
#NationalFamilyCaregiversMonth
November 2, 2025 at 6:37 PM
Caregiving is a journey of countless brave steps, and every single one matters. ❤️
If you ever need support, information, or simply someone who understands, AFTD’s HelpLine is here to help.
📩 info@theaftd.org
📞 1-866-507-7222
#NationalFamilyCaregiversMonth
If you ever need support, information, or simply someone who understands, AFTD’s HelpLine is here to help.
📩 info@theaftd.org
📞 1-866-507-7222
#NationalFamilyCaregiversMonth
We're kicking off November with #NationalFamilyCaregiversMonth by sharing 'Life After an FTD Diagnosis: What You Need to Know' — our updated booklet to help families navigate the journey with clarity and support.
📘 Download now: https://bit.ly/3WYTBbg
📘 Download now: https://bit.ly/3WYTBbg
November 1, 2025 at 9:08 PM
We're kicking off November with #NationalFamilyCaregiversMonth by sharing 'Life After an FTD Diagnosis: What You Need to Know' — our updated booklet to help families navigate the journey with clarity and support.
📘 Download now: https://bit.ly/3WYTBbg
📘 Download now: https://bit.ly/3WYTBbg
AFTD now supports the recommendation that all people diagnosed with FTD be offered genetic counseling and testing, aligning with guidance from the National Society of Genetic Counselors (NSGC) FTD/ALS Working Group.
⚪ Learn more: https://bit.ly/3X60tUg
⚪ Learn more: https://bit.ly/3X60tUg
October 31, 2025 at 8:50 PM
AFTD now supports the recommendation that all people diagnosed with FTD be offered genetic counseling and testing, aligning with guidance from the National Society of Genetic Counselors (NSGC) FTD/ALS Working Group.
⚪ Learn more: https://bit.ly/3X60tUg
⚪ Learn more: https://bit.ly/3X60tUg
After her FTD diagnosis, AFTD Persons with FTD Advisory Council co-chair Deb Jobe discovered an unexpected gift: art. What began with an adult coloring book grew into vivid, intricate pieces that fill her home with color.
🎨 Learn more: https://bit.ly/3WuPl33
🎨 Learn more: https://bit.ly/3WuPl33
October 30, 2025 at 8:48 PM
After her FTD diagnosis, AFTD Persons with FTD Advisory Council co-chair Deb Jobe discovered an unexpected gift: art. What began with an adult coloring book grew into vivid, intricate pieces that fill her home with color.
🎨 Learn more: https://bit.ly/3WuPl33
🎨 Learn more: https://bit.ly/3WuPl33
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
If you’re a U.S. federal employee, you can support AFTD’s mission through the Combined Federal Campaign (CFC).
🔴 Visit givecfc.org today and use our CFC number: 20444 to make a donation or pledge and help realize our shared vision of a future free of FTD.
🔴 Visit givecfc.org today and use our CFC number: 20444 to make a donation or pledge and help realize our shared vision of a future free of FTD.
October 29, 2025 at 5:01 PM
If you’re a U.S. federal employee, you can support AFTD’s mission through the Combined Federal Campaign (CFC).
🔴 Visit givecfc.org today and use our CFC number: 20444 to make a donation or pledge and help realize our shared vision of a future free of FTD.
🔴 Visit givecfc.org today and use our CFC number: 20444 to make a donation or pledge and help realize our shared vision of a future free of FTD.
Join AFTD’s upcoming Healthcare Professional Webinar on Nov. 18 at 12 p.m. ET, led by Stephanie Muskat, MSW, RSW, to explore how individual therapy can best support FTD care partners.
🎓 CEC credit available.
🔗 Register now: https://bit.ly/47qHXL7
🎓 CEC credit available.
🔗 Register now: https://bit.ly/47qHXL7
October 28, 2025 at 6:50 PM
Join AFTD’s upcoming Healthcare Professional Webinar on Nov. 18 at 12 p.m. ET, led by Stephanie Muskat, MSW, RSW, to explore how individual therapy can best support FTD care partners.
🎓 CEC credit available.
🔗 Register now: https://bit.ly/47qHXL7
🎓 CEC credit available.
🔗 Register now: https://bit.ly/47qHXL7
Dr. Steven Boeynaems, a #researcher at Baylor College of Medicine and Texas Children’s Hospital, describes his commitment to studying #FTD long-term, applying skill sets gained throughout his career.
October 27, 2025 at 7:16 PM
Dr. Steven Boeynaems, a #researcher at Baylor College of Medicine and Texas Children’s Hospital, describes his commitment to studying #FTD long-term, applying skill sets gained throughout his career.