The Association For Frontotemporal Degeneration

@theaftd.bsky.social

AFTD offers support, education, and research updates about frontotemporal degeneration (FTD) for families, caregivers, and healthcare professionals.

https://www.theaftd.org/

@theaftd.bsky.social

World Mental Health Day is a reminder that mental health matters throughout the FTD journey. For people living with FTD and their care partners, support can take many forms. Swipe for three ways to support mental health. AFTD’s HelpLine is here to help: 📞 1-866-507-7222 📧 [email protected]

A person gently holds another's hands in a supportive gesture. The image promotes World Mental Health Day, mentioning the relevance of mental health in the FTD journey. A logo for AFTD is visible in the corner.A promotional image from AFTD titled "3 Ways to Care for your Mental Health." It suggests: 1) Seek support through loved ones or AFTD's HelpLine. 2) Find ways to express yourself via art, music, or activities. 3) Make space for well-being, emphasizing mental health for people with FTD and their partners. Contact details are included.
@theaftd.bsky.social

📢 Join us for “How the FTD Disorders Registry Benefits Participants” on Tuesday, Oct. 20, at 2 p.m.

Learn how the Registry connects people impacted by FTD to research and how participant data support research.

🔴 Sponsored by AviadoBio.
👉 Register here: https://bit.ly/3TosgBh

This image is a promotional graphic for a webinar titled "How the FTD Disorders Registry Benefits Participants," happening on Tuesday, October 20, 2026, from 2:00-3:00 pm ET. Logos for AFTD, FTD Disorders Registry, and AviaDoBio are present. On the right, there's a photo of Carrie Millard, MS, CGC, CCRC, who is the Director of FTD Disorders Registry.
@theaftd.bsky.social

Philadelphia, you showed up! ❤️ Nearly 300 walkers from 10+ states joined us October 4, raising $80,000+ for AFTD! 🚶 Thank you to everyone who walked, volunteered, fundraised, or cheered us on. We’re grateful for this community so close to home. Together, we’re moving toward a future free of FTD.

A group of people participating in a "Walk for FTD" event, moving along a paved path. They are dressed casually, some wearing event-themed shirts and holding umbrellas. An event archway in the background displays "AFTD Walk for FTD: A New Path." The surrounding area is lush with autumn foliage.A group of people walking together in an outdoor fundraising event. One person holds a sign that says "Fast Track to an FTD Cure." The participants are wearing casual outdoor clothing and appear to be enjoying the event. Trees and a red sign are visible in the background.Colorful, painted rocks arranged on gravel spell out "IM WALK RP" amidst grass and fallen leaves. Each rock features unique designs and patterns.A group of four people stands together under a "Walk for FTD: A New Path" banner. They are wearing matching green "Team Hulk" shirts. Two Temple University flags are visible in the background. They are outdoors on a pathway lined with trees.
@theaftd.bsky.social

We’ve put a spotlight on FTD—and now, we’re passing it on. 🔦

We’re honoring voices raising awareness, advancing research, and sharing FTD experiences.

Who will you pass the spotlight to? Tag someone making a difference and challenge them to share a message about FTD. ✨

🔗 : https://bit.ly/4AjWeXx

A poster with the message "Pass the Spotlight." Below, it reads "This week, people around the world put a spotlight on FTD. Now we're passing it on." There is a ribbon with "#endFTD" written on it, and a spotlight graphic shines from the top-right corner.A poster with a light blue background features a spotlight and text highlighting Emma Heming Willis for advocacy for people and families affected by FTD. The poster includes a megaphone icon and a ribbon with the hashtag #endFTD.Spotlight poster highlighting the AFTD Persons with FTD Advisory Council. Includes the phrase, "For ensuring the voices and perspectives of people living with FTD help shape AFTD's work," and the hashtag #endFTD. Features icons of a spotlight, three individuals, and a ribbon.Spotlight graphic highlighting "AFTD Volunteers and Ambassadors" for supporting the mission and aiding those affected by FTD. Includes heart and ribbon symbols with hashtag #endFTD.
@theaftd.bsky.social

Advocacy takes many forms. ❤️

During World FTD Awareness Week, we’re putting advocacy in the spotlight and highlighting ways people raise awareness of FTD.

For some, it means sharing their story. For others, it means meeting with lawmakers or securing proclamations.

🔗: https://bit.ly/46q2Ea2

The image is a poster titled "Spotlight on Advocacy," featuring a spotlight illustration. It lists activities such as sharing stories, meeting with lawmakers, securing proclamations, raising awareness online, and highlighting FTD. A light blue ribbon with "#endFTD" is at the bottom right, and there's a note saying, "Every action helps create change!"
@theaftd.bsky.social

Research has the power to move us forward. 🔦

During World FTD Awareness Week, we’re shining a spotlight on research and how our community can help.

The FTD Disorders Registry connects people with opportunities to participate in FTD research.

Explore research opportunities: https://bit.ly/47hm0yl

Spotlight on Research poster featuring the FTD Disorders Registry. A dark ribbon at the bottom right has the hashtag #endFTD.Spotlight graphic highlighting "Research Participation" for FTD research. Invitation to join the FTD Disorders Registry. Includes icons of a spotlight, magnifying glass with a book, and a ribbon with "#endFTD.Promotional graphic with a spotlight effect highlighting the text: 'Spotlight on... Being Research Ready.' Below, it explains that FTD is rare and Registry participants are crucial for research. There’s a microscope illustration and a blue awareness ribbon with '#endFTD'.Spotlight graphic highlighting FTD research. The text reads: "Spotlight on... NUMBERS HAVE POWER. With more than 2,940 people participating, the Registry helps turn individual experiences into insights that can support FTD research." A blue ribbon with "#endFTD" is displayed.
@theaftd.bsky.social

California has established an FTD registry! 🎉

Governor Gavin Newsom signed SB 1047 into law, adding FTD to the state’s Neurodegenerative Disease Registry.

Thank you to the advocates, families, and bipartisan lawmakers who made this possible.

👉 Read more: https://bit.ly/4rJ3YhV

Image of two people holding signs about frontotemporal degeneration and supporting Senate Bill 1047. The text below mentions California's creation of a landmark dementia registry as Governor Newsom signs SB 1047 into law. The Association for Frontotemporal Degeneration logo is at the bottom.
@theaftd.bsky.social

Support can come from many places. 🩵

During World FTD Awareness Week, we’re shining a spotlight on the people and resources that help families navigate FTD. From loved ones to healthcare professionals, no one has to face FTD alone. ✨

Find an FTD support group: https://bit.ly/4iuJN4T

A poster with the text "Support can come from many places." Below, a list includes: Family and friends, Support groups, Healthcare professionals, The AFTD HelpLine, Others who understand the journey. A blue awareness ribbon features the hashtag #endFTD, placed under a spotlight on a light blue background.
@theaftd.bsky.social

Sharing your story can help put FTD in the spotlight. 🩵

Download the slide that reflects your connection to FTD, share it on social media, and tag AFTD during World FTD Awareness Week.

Your voice helps others understand FTD.

Learn more and access the Social Media Toolkit: https://bit.ly/3Tw5vLE

Poster with a spotlight effect on the text "Put a Spotlight on FTD". Below is a download icon with the text, "Download and share the slide that fits your connection to FTD," and a ribbon with "#endFTD".A spotlight illuminates text reading "I AM LIVING WITH FTD." in large letters with "theaftd.org" below. There's a blue ribbon in the corner with "#endFTD" on it.A poster with the text "I am an FTD care partner" illuminated by a spotlight. The bottom includes a blue awareness ribbon with the hashtag "#endFTD" and a website URL theaftd.org.Poster featuring a large white circle with the text "I AM AN FTD RESEARCHER" in light blue. The website "theaftd.org" is at the bottom. A spotlight shines from the top right. A light blue ribbon at the bottom right features the hashtag "#endFTD.
@theaftd.bsky.social

Day 1 of World FTD Awareness Week begins with a Spotlight on FTD.

Frontotemporal degeneration is a group of brain disorders that affect behavior, communication, and movement. 🔦

Join us as we put FTD in the spotlight—and tag someone who should know about FTD. 🩵

Learn more: https://bit.ly/4cSCgZX

Blue poster with the text 'Spotlight on FTD'. Below, it reads 'Today we’re starting the conversation and shining a light on FTD.' A ribbon with '#endFTD' is at the bottom right. Three spotlights shine from above.Image depicting information about Frontotemporal Degeneration (FTD). There is a silhouette of a head with a brain illustration. Text describes FTD as a group of brain disorders affecting behavior, communication, and movement. A blue awareness ribbon with the hashtag #endFTD is shown.Infographic about Frontotemporal Dementia (FTD). Three sections show: most cases occur between ages 45-60, onset ranges from 21-80, and progression length varies from 2-20+ years. A statement notes FTD's substantial impact on work, family, and finances. A ribbon with "#endFTD" is displayed.Blue poster featuring the phrase "Why awareness matters" followed by three points with icons: a megaphone for spreading knowledge, people for building community, and a heart for hope and cure. A ribbon with "#endFTD" is displayed at the bottom.
@theaftd.bsky.social

Many ways to make a difference for FTD.

⛳ Deb Scharper has raised nearly $81,000 through her golf tournament since 2017.

🥾 Devyn Tobin walked 40 miles with a 40-lb. vest, raising $3,809 in memory of his father, Jim.

Thank you for supporting our mission.

Start a fundraiser: https://bit.ly/4roU2tX

This image shows a collage of three photos related to AFTD (Association for Frontotemporal Degeneration) events. The top left photo features a person flexing a bicep with "Walk to END FTD" written on the arm, wearing a red apron. The top right photo shows a person outdoors wearing a cap and a t-shirt that reads "The Crusade 4 A Cure," holding a glove. The bottom photo displays a group of 14 individuals posing together in casual attire. The text "Independent Events" is prominently displayed in the center. The AFTD logo is in the bottom right corner.A person with a beard wearing a weighted vest is standing with another person in front of a building. A circular inset shows the person pointing upwards. The text reads: "DEVYN TOBIN. 40 Miles for FTD." It describes Devyn Tobin's walk from an FTD research lab in Worcester to the Massachusetts State House in Boston, wearing a 40 lb weighted vest, to raise FTD awareness and support AFTD's mission in memory of their father, Jim Tobin. AFTD logo is visible.Poster for the 10th Annual Crusade for a Cure Golf Tournament hosted by Deb Scarper in Osage, Iowa. It shows a group photo of participants, some holding golf clubs, and a smaller close-up image of two individuals smiling. The event has raised nearly $81,000 since 2017. The AFTD logo is visible.
@theaftd.bsky.social

The Walk for FTD is more than a walk—it’s a movement fueled by community, connection, and purpose. ❤️

Join us as we come together to support AFTD’s mission and move toward a future without FTD.

📍 Philadelphia — October 4
📍 Austin — November 14

Learn more and register: https://bit.ly/4ycwoTS

@theaftd.bsky.social

Across the country, the FTD community is coming together for Food for Thought! ❤️

Supporters are finding meaningful ways to connect, raise awareness, and support AFTD’s mission.

Be part of the impact. Support Food for Thought with a donation today: https://bit.ly/4h8AtTa

Three people are joyfully posing together. The person in the center is holding a wine bottle. The image includes the text "FOOD FOR THOUGHT Across the Country" at the top and "See how our community is showing up for FTD." at the bottom.A group of people smiling behind a bar with decorations and assorted items, featuring a sign for a "Cork Pull." Inset shows another group sitting at a table in a dining area, with a menu labeled "After School Food for Thought." The text highlights the versatility of hosting Food for Thought events, emphasizing community involvement.This image is a collage with text and three photos. The text reads: "Bringing people together. Every gathering is an opportunity to connect, share, and start conversations about FTD." Below is the AFTD logo with "Food for Thought." The first photo shows two people posing with a certificate. The second photo features three people smiling around a table with wine bottles. The third photo shows two people embracing in an outdoor setting.A group of people are gathered in a room with several tables displaying gift baskets. The setting appears to be an event for AFTD's mission, with the slogan "Turning gatherings into impact" visible. Attendees are mingling, and the atmosphere is lively and engaged.
@theaftd.bsky.social

The 2026 FTD Research Roundtable is in the books! Thank you to everyone who joined us to advance FTD research and treatment development. We look forward to turning these conversations into action. Together, we’re moving the field forward for families living with FTD.

A large group of people posing for a photo at the 2026 FTD Research Roundtable event. They're standing in front of a backdrop with the FTD logo. The ceiling has a modern design with circular lights.A group of nine people standing behind a table with microphones, in front of a backdrop displaying the AFTD logo and the phrase "Find Help Share Hope." The backdrop indicates "FTD Research Roundtable Leadership Committee.A group of people stands in front of a table at the FTD Research Roundtable, with a banner behind them that reads "Lived Experience & Advocacy Representatives.
@theaftd.bsky.social

What a day in Des Moines! ❤️ More than 500 walkers joined us for the first-ever Walk for FTD at Terra Park on September 19! Thank you to everyone who made it possible Together, we raised $90,000 to support AFTD’s mission! 🚶‍♂️ Thank you, Des Moines, for making our first Walk for FTD unforgettable! ❤️

A group of people participating in the "Walk for FTD" event, passing under an arch with the event name. One individual holds a framed photo. Participants wear teal shirts, and a few push strollers. The setting appears to be a park with trees in the background.A person being interviewed outdoors, holding a microphone with a news logo. The person is wearing a light blue "Walk for FTD" T-shirt and standing near a stone pillar with greenery in the background.Two individuals are hugging at a Walk to End Alzheimer’s event. Both are wearing casual clothing and caps, and one has a ponytail. In the background, people are gathered, with some seated on benches. The area is outdoors with trees visible.A group of people smiling and standing together outdoors wearing "Walk for FTD" t-shirts. A child is standing in front, holding a toy. The background features trees and a clear sky.
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