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/
Emma Heming Willis shares how art gives voice to those with FTD and what Bruce's journey has taught her about love: "Your love shifts. It expands and is different but very meaningful."
👉 Read her inspiring story: https://bit.ly/4qaYdHG
👉 Read her inspiring story: https://bit.ly/4qaYdHG
January 26, 2026 at 6:40 PM
Emma Heming Willis shares how art gives voice to those with FTD and what Bruce's journey has taught her about love: "Your love shifts. It expands and is different but very meaningful."
👉 Read her inspiring story: https://bit.ly/4qaYdHG
👉 Read her inspiring story: https://bit.ly/4qaYdHG
With Love is more than a fundraiser — it’s a way to honor someone you love, raise awareness of FTD, and support families facing this disease.
This February, join Scott and others as they turn love into action. Create a page, share your story, and help #endFTD: https://bit.ly/4pPEpJs
This February, join Scott and others as they turn love into action. Create a page, share your story, and help #endFTD: https://bit.ly/4pPEpJs
January 25, 2026 at 6:39 PM
With Love is more than a fundraiser — it’s a way to honor someone you love, raise awareness of FTD, and support families facing this disease.
This February, join Scott and others as they turn love into action. Create a page, share your story, and help #endFTD: https://bit.ly/4pPEpJs
This February, join Scott and others as they turn love into action. Create a page, share your story, and help #endFTD: https://bit.ly/4pPEpJs
🔍 The FTD diagnostic journey currently averages 3.6 years.
Being Patient Alzheimer's recently highlighted the complexities surrounding FTD diagnosis, shedding light on why so many families face years of uncertainty before receiving accurate answers.
👉 Learn more: https://bit.ly/4rcxcnX
Being Patient Alzheimer's recently highlighted the complexities surrounding FTD diagnosis, shedding light on why so many families face years of uncertainty before receiving accurate answers.
👉 Learn more: https://bit.ly/4rcxcnX
January 24, 2026 at 8:14 PM
🔍 The FTD diagnostic journey currently averages 3.6 years.
Being Patient Alzheimer's recently highlighted the complexities surrounding FTD diagnosis, shedding light on why so many families face years of uncertainty before receiving accurate answers.
👉 Learn more: https://bit.ly/4rcxcnX
Being Patient Alzheimer's recently highlighted the complexities surrounding FTD diagnosis, shedding light on why so many families face years of uncertainty before receiving accurate answers.
👉 Learn more: https://bit.ly/4rcxcnX
FTD remains difficult to diagnose, with no clinically validated biomarkers and no approved treatments or interventions.
AFTD’s 2025–2028 Strategic Plan outlines how we’re driving change: funding innovative research, empowering clinicians, and supporting families. Learn more: https://bit.ly/3LW7cy6
AFTD’s 2025–2028 Strategic Plan outlines how we’re driving change: funding innovative research, empowering clinicians, and supporting families. Learn more: https://bit.ly/3LW7cy6
January 23, 2026 at 8:51 PM
FTD remains difficult to diagnose, with no clinically validated biomarkers and no approved treatments or interventions.
AFTD’s 2025–2028 Strategic Plan outlines how we’re driving change: funding innovative research, empowering clinicians, and supporting families. Learn more: https://bit.ly/3LW7cy6
AFTD’s 2025–2028 Strategic Plan outlines how we’re driving change: funding innovative research, empowering clinicians, and supporting families. Learn more: https://bit.ly/3LW7cy6
The three most common genes associated with FTD are C9orf72, MAPT, and GRN — but there are others, and new discoveries are still being made.
Because symptoms can vary even within the same family, genetic FTD is often missed or misunderstood, even by health professionals: https://bit.ly/4pTIT1D
Because symptoms can vary even within the same family, genetic FTD is often missed or misunderstood, even by health professionals: https://bit.ly/4pTIT1D
January 22, 2026 at 9:45 PM
The three most common genes associated with FTD are C9orf72, MAPT, and GRN — but there are others, and new discoveries are still being made.
Because symptoms can vary even within the same family, genetic FTD is often missed or misunderstood, even by health professionals: https://bit.ly/4pTIT1D
Because symptoms can vary even within the same family, genetic FTD is often missed or misunderstood, even by health professionals: https://bit.ly/4pTIT1D
Living with FTD or caring for someone who is? You’re not alone.
Join AFTD’s Jan. 28 webinar to see how we’re collaborating with other orgs focused on related neurodegenerative diseases, advocating for meaningful change — together.
🖊️ Save your spot: https://bit.ly/3Yt4naA
Join AFTD’s Jan. 28 webinar to see how we’re collaborating with other orgs focused on related neurodegenerative diseases, advocating for meaningful change — together.
🖊️ Save your spot: https://bit.ly/3Yt4naA
January 21, 2026 at 6:09 PM
Living with FTD or caring for someone who is? You’re not alone.
Join AFTD’s Jan. 28 webinar to see how we’re collaborating with other orgs focused on related neurodegenerative diseases, advocating for meaningful change — together.
🖊️ Save your spot: https://bit.ly/3Yt4naA
Join AFTD’s Jan. 28 webinar to see how we’re collaborating with other orgs focused on related neurodegenerative diseases, advocating for meaningful change — together.
🖊️ Save your spot: https://bit.ly/3Yt4naA
At 20, artist Alyssa Nash learned she carries the gene for FTD, the same disorder affecting her father. She abandoned art in despair—now she's creating stunning pet portraits for an FTD calendar. Creativity can transform tragedy into hope.
🎨 Read more: https://bit.ly/45tKpAz
🎨 Read more: https://bit.ly/45tKpAz
January 20, 2026 at 6:14 PM
At 20, artist Alyssa Nash learned she carries the gene for FTD, the same disorder affecting her father. She abandoned art in despair—now she's creating stunning pet portraits for an FTD calendar. Creativity can transform tragedy into hope.
🎨 Read more: https://bit.ly/45tKpAz
🎨 Read more: https://bit.ly/45tKpAz
🏃♂️🏃♀️ AFTD-Team Race Season is here!
In 2026, we're showing up across the country, from Philadelphia to Honolulu, to raise awareness and critical funds for families affected by FTD.
Whether you run, walk, or ride, there's a place for you on our team. ❤️ Sign up or learn more: https://bit.ly/4qpSE8U
In 2026, we're showing up across the country, from Philadelphia to Honolulu, to raise awareness and critical funds for families affected by FTD.
Whether you run, walk, or ride, there's a place for you on our team. ❤️ Sign up or learn more: https://bit.ly/4qpSE8U
January 19, 2026 at 5:51 PM
🏃♂️🏃♀️ AFTD-Team Race Season is here!
In 2026, we're showing up across the country, from Philadelphia to Honolulu, to raise awareness and critical funds for families affected by FTD.
Whether you run, walk, or ride, there's a place for you on our team. ❤️ Sign up or learn more: https://bit.ly/4qpSE8U
In 2026, we're showing up across the country, from Philadelphia to Honolulu, to raise awareness and critical funds for families affected by FTD.
Whether you run, walk, or ride, there's a place for you on our team. ❤️ Sign up or learn more: https://bit.ly/4qpSE8U
Spencer C. turned grief into action by biking 3,600 miles across the country in memory of his father. His words reflect what drives our entire community: the belief that families deserve better care, earlier diagnosis, and real hope for the future.
Read now: https://bit.ly/3NGoy2r
Read now: https://bit.ly/3NGoy2r
January 17, 2026 at 7:18 PM
Spencer C. turned grief into action by biking 3,600 miles across the country in memory of his father. His words reflect what drives our entire community: the belief that families deserve better care, earlier diagnosis, and real hope for the future.
Read now: https://bit.ly/3NGoy2r
Read now: https://bit.ly/3NGoy2r
Dignity in FTD caregiving lives in the small moments: the choice to wear slippers to the store, the written reminder instead of a verbal correction. How caregivers preserve identity matters.
👉 Read more: https://bit.ly/4jI8bi6
👉 Read more: https://bit.ly/4jI8bi6
January 16, 2026 at 8:50 PM
Dignity in FTD caregiving lives in the small moments: the choice to wear slippers to the store, the written reminder instead of a verbal correction. How caregivers preserve identity matters.
👉 Read more: https://bit.ly/4jI8bi6
👉 Read more: https://bit.ly/4jI8bi6
AFTD’s 2026 research priorities are focused on shortening the FTD diagnostic journey and improving clinical trial readiness. From new biomarker tools to empowering families in research, learn how AFTD is working to drive progress for all affected by FTD.
🔍 Read now: https://bit.ly/49rCXXH
🔍 Read now: https://bit.ly/49rCXXH
January 15, 2026 at 8:51 PM
AFTD’s 2026 research priorities are focused on shortening the FTD diagnostic journey and improving clinical trial readiness. From new biomarker tools to empowering families in research, learn how AFTD is working to drive progress for all affected by FTD.
🔍 Read now: https://bit.ly/49rCXXH
🔍 Read now: https://bit.ly/49rCXXH
The science behind neurodegenerative diseases is evolving, and so is our approach to advocacy. On Jan. 28, join AFTD and partner organizations to learn how working together can lead to more substantial support for our communities.
📍 Register now: https://bit.ly/3Yt4naA
📍 Register now: https://bit.ly/3Yt4naA
January 14, 2026 at 6:05 PM
The science behind neurodegenerative diseases is evolving, and so is our approach to advocacy. On Jan. 28, join AFTD and partner organizations to learn how working together can lead to more substantial support for our communities.
📍 Register now: https://bit.ly/3Yt4naA
📍 Register now: https://bit.ly/3Yt4naA
When Sean Durbin struggled to find words, his wife asked one question: "What do we do now?" Their answer: live life in fast forward. Meet "Sean 2.0" and discover their inspiring FTD journey.
➡️ Read more: https://bit.ly/4stuY59
➡️ Read more: https://bit.ly/4stuY59
January 13, 2026 at 5:55 PM
When Sean Durbin struggled to find words, his wife asked one question: "What do we do now?" Their answer: live life in fast forward. Meet "Sean 2.0" and discover their inspiring FTD journey.
➡️ Read more: https://bit.ly/4stuY59
➡️ Read more: https://bit.ly/4stuY59
AFTD Ambassador Deb S. and her daughter, Alyssa, are raising awareness, sharing their family’s experience with FTD, & advocating for a future with earlier diagnosis & improved support. Their voices show the power of community & action.
Interested in volunteering? Learn more: https://bit.ly/4bnm4Qq
Interested in volunteering? Learn more: https://bit.ly/4bnm4Qq
January 12, 2026 at 5:47 PM
AFTD Ambassador Deb S. and her daughter, Alyssa, are raising awareness, sharing their family’s experience with FTD, & advocating for a future with earlier diagnosis & improved support. Their voices show the power of community & action.
Interested in volunteering? Learn more: https://bit.ly/4bnm4Qq
Interested in volunteering? Learn more: https://bit.ly/4bnm4Qq
Daniel Barvin carries the gene for FTD. Instead of waiting, he left finance to develop treatments—and now his company's therapy shows real promise. His story proves hope can fuel scientific breakthroughs.
👉 Read more: https://bit.ly/4q5xkpb
👉 Read more: https://bit.ly/4q5xkpb
January 11, 2026 at 6:25 PM
Daniel Barvin carries the gene for FTD. Instead of waiting, he left finance to develop treatments—and now his company's therapy shows real promise. His story proves hope can fuel scientific breakthroughs.
👉 Read more: https://bit.ly/4q5xkpb
👉 Read more: https://bit.ly/4q5xkpb
This February, help us Spread Love for all impacted by FTD. ❤️
Join AFTD’s 15th Annual With Love campaign by creating a fundraiser, honoring someone you love, or sharing your story.
✨ Click the link to start your With Love journey today: https://bit.ly/3Nzvy12
Join AFTD’s 15th Annual With Love campaign by creating a fundraiser, honoring someone you love, or sharing your story.
✨ Click the link to start your With Love journey today: https://bit.ly/3Nzvy12
January 10, 2026 at 6:55 PM
This February, help us Spread Love for all impacted by FTD. ❤️
Join AFTD’s 15th Annual With Love campaign by creating a fundraiser, honoring someone you love, or sharing your story.
✨ Click the link to start your With Love journey today: https://bit.ly/3Nzvy12
Join AFTD’s 15th Annual With Love campaign by creating a fundraiser, honoring someone you love, or sharing your story.
✨ Click the link to start your With Love journey today: https://bit.ly/3Nzvy12
AFTD created Diagnostic Checklists, to help identify red flags for bvFTD, PPA, FTD-ALS, and PSP. These tools allow you to note symptoms you or your loved one are experiencing and enable you to share clear, structured information with a physician.
Download today: https://bit.ly/4jqu45j
Download today: https://bit.ly/4jqu45j
January 9, 2026 at 7:59 PM
AFTD created Diagnostic Checklists, to help identify red flags for bvFTD, PPA, FTD-ALS, and PSP. These tools allow you to note symptoms you or your loved one are experiencing and enable you to share clear, structured information with a physician.
Download today: https://bit.ly/4jqu45j
Download today: https://bit.ly/4jqu45j
We extend our deepest thanks to Dr. Walter Koroshetz for nearly two decades of leadership at NINDS and his profound impact on FTD research. His commitment helped accelerate progress toward earlier diagnosis and future treatments for FTD. Learn more: https://bit.ly/3Z14IBq
January 8, 2026 at 9:10 PM
We extend our deepest thanks to Dr. Walter Koroshetz for nearly two decades of leadership at NINDS and his profound impact on FTD research. His commitment helped accelerate progress toward earlier diagnosis and future treatments for FTD. Learn more: https://bit.ly/3Z14IBq
Neurodegenerative diseases like FTD and ALS often share more than symptoms — they share biology and care challenges. Join us on Jan. 28 at 3 p.m. EST to learn how collaboration across advocacy orgs can drive real progress.
🔗 Register now: https://bit.ly/3Yt4naA
🔗 Register now: https://bit.ly/3Yt4naA
January 7, 2026 at 8:08 PM
Neurodegenerative diseases like FTD and ALS often share more than symptoms — they share biology and care challenges. Join us on Jan. 28 at 3 p.m. EST to learn how collaboration across advocacy orgs can drive real progress.
🔗 Register now: https://bit.ly/3Yt4naA
🔗 Register now: https://bit.ly/3Yt4naA
AFTD, alongside leading research partners, has awarded $2.1 million to advance diagnostic biomarker research for FTD, funding three research projects focused on identifying biomarkers in blood and spinal fluid.
➡️ Learn more: https://bit.ly/3YlcgPk
➡️ Learn more: https://bit.ly/3YlcgPk
January 6, 2026 at 6:13 PM
AFTD, alongside leading research partners, has awarded $2.1 million to advance diagnostic biomarker research for FTD, funding three research projects focused on identifying biomarkers in blood and spinal fluid.
➡️ Learn more: https://bit.ly/3YlcgPk
➡️ Learn more: https://bit.ly/3YlcgPk
“Educate, educate, educate.” ❤️
Kevin Rhodes, Co-Chair of AFTD’s Persons with FTD Advisory Council, shares a powerful call to action: shorten the time to diagnosis. Today, it takes an average of 3.6 years for someone to receive an accurate FTD diagnosis. Learn more about FTD: https://bit.ly/4s8ItH4
Kevin Rhodes, Co-Chair of AFTD’s Persons with FTD Advisory Council, shares a powerful call to action: shorten the time to diagnosis. Today, it takes an average of 3.6 years for someone to receive an accurate FTD diagnosis. Learn more about FTD: https://bit.ly/4s8ItH4
January 5, 2026 at 6:10 PM
“Educate, educate, educate.” ❤️
Kevin Rhodes, Co-Chair of AFTD’s Persons with FTD Advisory Council, shares a powerful call to action: shorten the time to diagnosis. Today, it takes an average of 3.6 years for someone to receive an accurate FTD diagnosis. Learn more about FTD: https://bit.ly/4s8ItH4
Kevin Rhodes, Co-Chair of AFTD’s Persons with FTD Advisory Council, shares a powerful call to action: shorten the time to diagnosis. Today, it takes an average of 3.6 years for someone to receive an accurate FTD diagnosis. Learn more about FTD: https://bit.ly/4s8ItH4
📚 Looking for an Introduction to FTD?
Whether you're a healthcare professional, caregiver, or just starting to learn about FTD, these books offer powerful insights into the challenges of living with and caring for someone with FTD.
👉 Learn more about these books: https://bit.ly/4pLZCVG
Whether you're a healthcare professional, caregiver, or just starting to learn about FTD, these books offer powerful insights into the challenges of living with and caring for someone with FTD.
👉 Learn more about these books: https://bit.ly/4pLZCVG
January 4, 2026 at 6:39 PM
📚 Looking for an Introduction to FTD?
Whether you're a healthcare professional, caregiver, or just starting to learn about FTD, these books offer powerful insights into the challenges of living with and caring for someone with FTD.
👉 Learn more about these books: https://bit.ly/4pLZCVG
Whether you're a healthcare professional, caregiver, or just starting to learn about FTD, these books offer powerful insights into the challenges of living with and caring for someone with FTD.
👉 Learn more about these books: https://bit.ly/4pLZCVG
As an AFTD volunteer, K.C. honors his wife’s life by raising awareness & helping more people understand this disease. Volunteers like him are the heart of our work, bringing compassion, lived experience, & purpose into communities across the country.
Become an AFTD volunteer: https://bit.ly/48YaAjv
Become an AFTD volunteer: https://bit.ly/48YaAjv
January 3, 2026 at 7:46 PM
As an AFTD volunteer, K.C. honors his wife’s life by raising awareness & helping more people understand this disease. Volunteers like him are the heart of our work, bringing compassion, lived experience, & purpose into communities across the country.
Become an AFTD volunteer: https://bit.ly/48YaAjv
Become an AFTD volunteer: https://bit.ly/48YaAjv
AFTD’s new recommendation is that all people diagnosed with FTD be offered genetic counseling and testing, regardless of family history.
It outlines the process and provides information on how families can access counseling, testing options, and trusted support. Read now: https://bit.ly/44Jo3KP
It outlines the process and provides information on how families can access counseling, testing options, and trusted support. Read now: https://bit.ly/44Jo3KP
January 2, 2026 at 9:20 PM
AFTD’s new recommendation is that all people diagnosed with FTD be offered genetic counseling and testing, regardless of family history.
It outlines the process and provides information on how families can access counseling, testing options, and trusted support. Read now: https://bit.ly/44Jo3KP
It outlines the process and provides information on how families can access counseling, testing options, and trusted support. Read now: https://bit.ly/44Jo3KP
2026 begins with community at the center. ❤️
These faces represent strength, advocacy, and the many ways people show up for the FTD community. As the new year unfolds, AFTD remains committed to paving the path forward to #endFTD.
These faces represent strength, advocacy, and the many ways people show up for the FTD community. As the new year unfolds, AFTD remains committed to paving the path forward to #endFTD.
January 1, 2026 at 4:06 PM
2026 begins with community at the center. ❤️
These faces represent strength, advocacy, and the many ways people show up for the FTD community. As the new year unfolds, AFTD remains committed to paving the path forward to #endFTD.
These faces represent strength, advocacy, and the many ways people show up for the FTD community. As the new year unfolds, AFTD remains committed to paving the path forward to #endFTD.