Genetics can play a role in FTD. Approximately 40% of people diagnosed with FTD have a family history of FTD or a related condition. 🧬 Learn more about FTD and genetics: https://bit.ly/4dvwwEY

Research that improves support for people affected by FTD matters. Congratulations to Kelly Atkins, PhD, recipient of AFTD’s 2026 Well-Being in FTD Pilot Grant. Her project will evaluate a model of post-diagnostic support for people with FTD and their caregivers. Learn more: https://bit.ly/4fXZdgD

Did you know primary progressive aphasia (PPA) affects communication and language? PPA is a form of frontotemporal degeneration that impacts speaking, understanding, reading, and writing. There are different types of PPA, each affecting language differently. 🧠 Learn more: https://bit.ly/3PPM5j2

A message from Susan Dickinson to the AFTD community. ❤️ Click here to learn about the Dickinson Empowerment Fund today: https://bit.ly/4vjcJ33

Ron Adkins’ wife began showing signs of change, and their lives slowly started to look different. Frontotemporal degeneration (FTD) also impacts families and relationships. Ron is sharing his story to raise awareness and help others feel less alone. ❤️ Learn more here: https://bit.ly/4fhah8c

Amazing support from our community! ❤️ 🏃‍♀️ Brianna Phillips and her family raised $4,654 at the Pittsburgh Marathon in honor of her father, Brian, who is living with FTD. 🎹 Guy Margolin’s Dueling Pianos event raised $1,100 while spreading awareness about FTD.

Melissa Jacobson shares why hosting the Walk for FTD in the Des Moines Area is so meaningful to her. ❤️ Join us in the Des Moines Area as we walk to support all affected by FTD and help move research forward. ▶️ Learn more and register: https://bit.ly/4nqITqq

🧬Several genes have been linked to FTD, but it’s not always possible to predict how the disease will develop based on a specific gene. Understanding genetics can help individuals and families make more informed decisions. 🔗 Learn more about FTD and genetics here: https://bit.ly/3QZuTrD

When Susan Dickinson began leading AFTD 18 years ago, FTD research was in its early stages. We now better understand FTD — thanks to families in research. To honor her legacy, AFTD created the Dickinson Empowerment Fund. ❤️ Your gift will be matched through 5/31. Give today: https://bit.ly/3PMaJ3E

This past weekend, 36 participants represented The AFTD-Team at the Colfax Marathon and raised more than $2,600 to support AFTD’s mission. 👟❤️ Every mile completed raises awareness and supports families facing FTD. Thank you to the runners and everyone who supported The AFTD-Team this weekend!

An early laboratory study by an AFTD grantee explored a form of glycogen produced by some strains of gut bacteria as a potential contributor in C9orf72-related #FTD and #ALS. Further research is needed to determine drug-target potential. Learn more: https://bit.ly/4dgd7cl

Passage Bio has discontinued the upliFT-D clinical trial for FTD-GRN due to regulatory requirements that a Phase 3 trial would require a placebo-controlled arm. Click here to learn more: https://bit.ly/4tBabvA

Hope Rising 2026 ❤️ In March, we celebrated our 10th annual Hope Rising Benefit and raised $2.1M for FTD. We're so grateful for this community and everyone who made it possible. ✨

A huge thank you to Team Advance, who represented AFTD at this year’s TD Bank Five Boro Bike Tour! 🚲 ❤️ Together, the team raised $21,081, bringing their two-year total to $99,708 to support AFTD’s mission to help those impacted by FTD.

Meet the Researcher: Rosa Rademakers, PhD 💡 From leading and contributing to landmark genetic discoveries in FTD to collaborating on international research efforts, Dr. Rademakers is transforming our knowledge of FTD genetics. 🔗 Read more here: https://bit.ly/4wC7flo

❔ Did you know FTD and ALS can occur in the same person? This is known as FTD-ALS. Symptoms can include changes in behavior, language, and movement. The C9orf72 gene is the most common cause of both genetic FTD and genetic ALS. 🧠 Learn more: https://bit.ly/4cOf5Am

🧠 Today is National Brain Donation Awareness Day. Brain donation plays a critical role in advancing research and helping us better understand FTD. Through this generosity, researchers move closer to future breakthroughs. 🔗 Learn more about brain donation and its impact here: https://bit.ly/4ee86Sm

🧬 Researcher and AFTD Medical Advisor Rosa Rademakers, PhD, received a 2026 Breakthrough Prize. Congratulations, Dr. Rademakers and Dr. Bryan Traynor, on the award for your discovery connecting C9orf72 repeat expansions to FTD and ALS! Learn more: https://bit.ly/4vXmuVE

Real change starts with real voices. 🎤 By becoming an advocate for frontotemporal degeneration, you can help raise awareness, influence policy, and push for better care and research. 🗣️ You don’t need to be an expert—just willing to speak up. Become an advocate here: https://bit.ly/4tzskL3

Thank you for attending the AFTD 2026 Education Conference! Over two days, our community connected, learned, and engaged—together. Grateful to Susan Dickinson for 18 years of leadership. See you in Raleigh, NC, next year! ❤️

Day one at the AFTD 2026 Education Conference brought connection, creativity, and powerful conversations about research, care, and community. We’re grateful to everyone joining us in person and virtually, and we look forward to day two. ❤️

Did you know progressive supranuclear palsy is an FTD disorder that commonly affects movement? Early symptoms often include stiffness of the axial muscles, neck, and trunk, along with changes in balance and coordination. 🧠 Learn more: https://bit.ly/4thzgMm

AFTD would like to thank our sponsors, Passage Bio and AviadoBio, for their generous support of the 2026 Education Conference! If you are attending in person, be sure to visit their booths. 👉 Our virtual audience can learn more about their work by visiting our website: https://bit.ly/4bZ2Iku

How does FTD differ from Alzheimer’s disease? ➡️ It typically strikes younger. ➡️ It is often misdiagnosed. ➡️ It has different symptoms. Learn more: https://bit.ly/4tLjh9G

In honor of her husband Steve, AFTD Ambassador Carrie Edwards shares her story with students, works with legislators to raise awareness, and helps expand understanding of FTD across communities. Thank you, Carrie, and all AFTD volunteers, for making a lasting difference. ❤️ #NationalVolunteerWeek

When Carrie Edwards first connected with AFTD after her husband’s FTD diagnosis, she found support and a community that understood her. Today, she shares her voice as an AFTD Ambassador, so others know they are not alone. During #NationalVolunteerWeek, we’re grateful for Ambassadors like Carrie! ❤️

Yesterday, we shared how Anika H.’s grandfather’s FTD diagnosis and passing shaped her connection to AFTD’s mission. Today, she’s helping bring FTD education to her community through provider outreach visits and local events, so more professionals recognize the signs of FTD. ❤️ Thank you, Anika!

Before becoming an AFTD volunteer, Anika Honaker was first a granddaughter searching for answers after her grandfather’s FTD diagnosis and passing. Today, she volunteers so other families can connect to support sooner. ❤️ Leave a thank-you for Anika in the comments this #NationalVolunteerWeek!

This #NationalVolunteerWeek, we’re honoring the people who help keep AFTD’s mission rooted in service and growing together! ❤️ Volunteers show up for families facing FTD by leading support groups, sharing resources, raising awareness, and advocating for change. Thank you to all volunteers!

#FlashbackFriday to last year’s AFTD Education Conference — a time to connect, learn, and engage on the latest in FTD research and approaches to care. The AFTD '26 Education Conference is just two weeks away. There’s still time to join us in-person or online. Register today: https://bit.ly/4tlZwG6

A member of AFTD staff and a medical advisor contributed to a study that analyzes the ability of five assays to capture levels of the protein neurofilament light, a biomarker for damage associated with neurodegenerative diseases like FTD and ALS. Click here to learn more: https://bit.ly/4vfbClp

Our runners are fueled and ready. ❤️ Big thank you to LMNT for gifting our team with electrolytes to keep them going on race day. We're grateful for partners who show up for the AFTD community.

Wendy Cogan and her husband, Jeff, who lived with corticobasal degeneration, a form of FTD, faced a long and challenging journey to find answers. Today, Wendy is sharing her family’s story in hopes of inspiring others to take part in FTD research. ❤️ Give today: https://bit.ly/3PMaJ3E

AFTD is pleased to announce the newest recipient of the 2026 Clinical Research Training Scholarship in FTD! Jesús García-Castro, MD, is working on a project to diagnose PSP and CBD earlier using blood tests and brain imaging. Read more: https://bit.ly/4tyWCgI

The AFTD 2026 Education Conference is right around the corner! We are excited to have several exhibitors on-site this year and encourage our attendees to visit their booths on April 30-May 1. For those attending virtually, you can learn more about our exhibitors’ work here: https://bit.ly/4uGVCbH

Jesús García-Castro, MD was awarded the 2026 Next Generation Research Grant in #FrontotemporalDementia. Institution: Institut de Recerca Sant Pau This research is co-funded with @theaftd.bsky.social. More ➡️ buff.ly/gGXsiuD #FTDResearch

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.

It’s Primary Progressive Aphasia Awareness Week 🧠 💬 PPA is the gradual loss of the ability to speak, read, write, and understand what others are saying. Experts describe three clinical subtypes based on the communication skills most initially affected: nfvPPA, svPPA, and lvPPA. ⬇️ Learn more ⬇️

Advocate Linde Lee Jacobs recently shared with CNBC how she is preparing her family for the future as a carrier of #MAPT, a risk gene associated with #FTD. 🔴 Learn more: https://bit.ly/4dC2IZb

Join AFTD on April 14 at 4 pm for an “Ask a Genetic Counselor” webinar with Krista Savage. This open-format session will explore genetic testing, familial FTD, and how results may inform you and your loved ones. 🔴 Sponsored by Passage Bio 👉 Sign up today: https://bit.ly/47YenO3

Wendy Cogan and her husband faced a lengthy journey to an FTD diagnosis of corticobasal degeneration (CBD), marked by several misdiagnoses. Today, Wendy advocates for research so future families can receive faster diagnosis, better treatments, and hope. ❤️ Give today: https://bit.ly/3PMaJ3E

🚨 Important funding update 🚨 AFTD and the Alzheimer's Drug Discovery Association have awarded a >$2.4 million grant to AviadoBio, supporting the expansion of their ASPIRE-FTD trial. Learn more: https://bit.ly/4djzttS

Apathy is one of the most common and challenging symptoms of behavioral variant FTD. It can look like a loss of interest in hobbies, social withdrawal, or a decline in self-care. Apathy isn’t the same as depression, and managing it requires a different approach. 👉 Learn more: https://bit.ly/4ttq5sq

Did you know approximately one in five people diagnosed with FTD has a genetic cause, regardless of family history? That’s why community providers play a critical role in connecting families affected by FTD to genetic services. 👉 Learn more: https://bit.ly/4m93j6O

A study published in Molecular Neurodegeneration sets out to find clues that could help detect or better understand #CTE, which shares some features with other disorders like #FTD. ➡️ Learn more: https://bit.ly/41mH2Zm

Healthcare professionals and researchers play a vital role in improving recognition and care for people affected by FTD. The AFTD 2026 Education Conference offers opportunities to learn from leading experts and hear perspectives from people with lived experience. Register now: https://bit.ly/3Q1uswg

Join AFTD on April 14 at 4 pm for an open-format webinar with genetic counselor Krista Savage. Bring your questions about genetic testing, family risk, and available resources. 🔴 Sponsored by Passage Bio 👉 Sign up today: https://bit.ly/47YenO3

Did you know behavioral variant FTD is the most common form of FTD, accounting for about half of all cases? The hallmarks of bvFTD are personality changes, apathy, and a progressive decline in socially appropriate behavior, judgment, self-control, and empathy. 🧠 Learn more: https://bit.ly/3Nq2Znl

What is disinhibition in frontotemporal degeneration? It refers to the inability to control or suppress an immediate, impulsive response to a situation. These changes include socially inappropriate behavior, loss of manners, & impulsive, rash, or careless actions. Learn more: https://bit.ly/4bQH5S2

AviadoBio recently announced that it is expanding its ASPIRE-FTD clinical trial for an experimental gene therapy for FTD-GRN to a new six-person cohort. Learn more: https://bit.ly/40IVsmE