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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/

354 Posts170 Follower 37 Folgt

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 1h ago

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 📧 info@theaftd.org

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 22h ago

Connection, knowledge, & community were at the heart of Caregivers Day at #ISFTD2026. Together with the @pennftdc.bsky.social & ISFTD, AFTD was proud to support a day dedicated to the people & families navigating FTD, creating opportunities to learn & hear from experts & those with lived experience.

This image features a composite of two photos and a banner from the ISFTD 2026 conference in Philadelphia, focusing on frontotemporal dementia. The banner welcomes attendees to Caregivers Day, showcasing logos of supporting organizations like AFTD, Penn FTD Center, and ISFTD. The upper right photo shows a group near a sign that reads, "You don't have to take this journey alone." The lower right photo displays a group standing behind a table with a Penn Frontotemporal Degeneration Center banner.

This is a four-image collage from ISFTD 2026. The top left image shows attendees seated and viewing a presentation slide with descriptions of speakers. The top right image features two people smiling at the camera in a conference area. The bottom left image shows two people posing together, smiling. The bottom right image depicts a presenter at a podium delivering a talk to an audience.

Three people are standing indoors, smiling and posing for a photo. They are wearing business casual attire and have name tags. The setting appears to be a conference or event space with natural light coming through windows.

AFTD staff smiling and standing in front of a red display with the text "You don't have to take this journey alone." They are at an event with name badges and a table displaying brochures and a bowl of candy.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 23h ago

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2d ago

📢 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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 3d ago

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 4d ago

Genetic FTD can shape a family’s story far beyond diagnosis. Kim Jenny, AFTD’s Manager of Genetic Initiatives, shares how genetic FTD affects families and how their stories can help guide better treatments. Learn more about FTD and genetics: https://bit.ly/4h6VvjU

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 5d ago

Did you know corticobasal syndrome (CBS) can affect movement, cognition, behavior, and language? CBS is an FTD disorder that often causes movement changes that begin on one side of the body and may eventually affect both sides. 🧠 Learn more: https://bit.ly/4huDcVN

Informational graphic titled '5 Things Everyone Should Know About Corticobasal Syndrome (CBS)' by The Association for Frontotemporal Degeneration, featuring a silhouette figure on the right.

The image is an informational graphic from the Association for Frontotemporal Degeneration. It discusses the difficulty of diagnosing Corticobasal Syndrome (CBS), which can resemble other disorders and start with movement, cognitive, or language changes. There's an icon of a clipboard with a magnifying glass.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 6d ago

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · last wk.

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!"

The Association For Frontotemporal Degeneration @theaftd.bsky.social · last wk.

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · last wk.

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

The Association For Frontotemporal Degeneration @theaftd.bsky.social · last wk.

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · last wk.

Today, we’re putting the FTD community in the spotlight. 🩵 During World FTD Awareness Week, we’re celebrating everyone living with FTD, supporting a loved one, volunteering, advocating, and working to #endFTD. Tag someone who has made a difference in your FTD journey. 🔗: https://bit.ly/4AnPMyY

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2w ago

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2w ago

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2w ago

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

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2w ago

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

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2w ago

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.

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2w ago

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 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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 2w ago

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.

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.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 3w ago

📢 Join us next week for “Legal and Financial Planning After an FTD Diagnosis” on Tuesday, Sept. 29, at 1 p.m. Learn about legal planning considerations, protections under U.S. law, and steps to consider after an FTD diagnosis. Register now: https://bit.ly/3UK1pQg

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 3w ago

Did you know FTD is the most common dementia for people under age 60? Yet it remains widely unknown. ❤️ Food For Thought brings people together to raise awareness and support families affected by FTD. Donate to Food For Thought: https://bit.ly/4yyh1VK

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 3w ago

Tee time for Driving Hope in New York is almost here! ⛳ Thank you to Apollo Global Management, our Albatross Sponsor. Join us Monday, September 28, at Metropolis Golf Club in White Plains, NY. Hit the links with AFTD to raise awareness and support our mission: https://bit.ly/4zXZiZr

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 3w ago

FTD in 30 seconds ⏱️🧠 Frontotemporal degeneration (FTD) is a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. FTD can look different from person to person. Click here for more information and resources: https://bit.ly/4AfVzqa

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 3w ago

Every step makes an impact. 👕 Register for the Walk for FTD 2026 and raise or donate $100 to receive your 2026 Walk for FTD T-shirt. Walk in Des Moines, Philadelphia, or Austin—or join virtually from wherever you are. Register here: https://bit.ly/4gSQ0Ff

A gray T-shirt is displayed against a background with red curtains. The T-shirt has the text "Walk for FTD 2026: A New Path" printed on it. Above the T-shirt, a message reads, "Every step makes an impact. Get the 2026 Walk for FTD T-shirt.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 3w ago

📢 Join us for “Legal and Financial Planning After an FTD Diagnosis” on Tuesday, Sept. 29, at 1 p.m. Learn about legal and financial planning after an FTD diagnosis, including decision-making, legal protections, and steps to consider. 🔗 https://bit.ly/3UK1pQg

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 4w ago

Clinical trials offer hope for new FTD treatments, but the field must be ready to move promising therapies forward. Learn how AFTD is working to lower barriers to clinical trials, creating opportunities to find effective treatments and support faster, more efficient trials. https://bit.ly/4i0SyU1

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 4w ago

Did you know progressive supranuclear palsy (PSP) primarily affects movement? PSP is a form of frontotemporal degeneration that can affect balance, walking, eye movement, speech, and swallowing. 🧠 Learn more: https://bit.ly/3SYgZqS

This image is an informative graphic about Progressive Supranuclear Palsy (PSP) created by The Association for Frontotemporal Degeneration. The left section, labeled "1," states that PSP primarily affects movement, including balance, walking, and coordination. The right section, labeled "2," indicates that frequent falls and balance problems are common early signs, with symptoms often including stiffness, poor balance, and frequent falls.

This image is an informational graphic from AFTD about Progressive Supranuclear Palsy (PSP). Panel 3 illustrates that PSP can affect eye movement, making it difficult to look up or down, blink, or close eyes. Panel 4 explains that PSP can affect speech and swallowing, causing slowed or slurred speech, gagging, or choking. Simple eye and mouth line drawings accompany the text.

The image is a slide titled "PSP is associated with tau." It includes logos for AFTD and Cure PSP and features a large DNA double helix symbol in the center. The text explains that PSP is connected with tau protein buildup in the brain, especially the 4R tau form. The background is white with a red design element at the bottom.

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 4w ago

Kevin Rhodes is living with FTD—and he’s using his voice to share what that experience feels like. In his powerful poem, “This Damn FTD,” Kevin puts words to the frustration, challenges, and emotions that can come with living with FTD. 🧠 Learn more about FTD: https://bit.ly/4qNTbCQ

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 4w ago

World FTD Awareness Week is almost here! From September 28–October 4, help put a spotlight on FTD by sharing your story or posting a photo or video. Every action helps raise awareness. Download the social media toolkit and join us in spreading awareness.🩵: https://bit.ly/4yhwqJX

The image is a promotional graphic for World FTD Awareness Week, which is from September 28 to October 4, 2026. It includes the text "World FTD Awareness Week is almost here" and features a blue awareness ribbon with the hashtag #endFTD. The design includes blue wave-like patterns.

The image features a blue background with the text "This year's theme: Put a Spotlight on FTD." A spotlight illustration shines on the text. There's a blue ribbon with the hashtag "#endFTD."

Infographic titled "Anyone can participate." It lists groups: People living with FTD, Healthcare professionals, Care partners, Advocates, Families, and Researchers. Includes a blue awareness ribbon with "#endFTD.