The Association For Frontotemporal Degeneration
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The Association For Frontotemporal Degeneration
@theaftd.bsky.social
120 followers 34 following 90 posts
AFTD envisions a world with compassionate care, effective support, and a future free of Frontotemporal Degeneration (FTD). #EndFTD

https://www.theaftd.org/
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theaftd.bsky.social
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
Quote and photo from Aisha A. for National Family Caregivers Month 2025 Graphic featuring AFTD's newly updated 'After Diagnosis' booklet and how it is available for download now
November 17, 2025 at 4:46 PM
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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
Photo of Emma Heming Willis, courtesy of the Soho Sessions with the following title 'Vanity Fair Features Soho Sessions AFTD Benefit in Honor of Bruce Willis'
November 16, 2025 at 6:41 PM
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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!
Caroline and Mary Klinedinst's After Party Abrar with medal Mary Turville's family Mary Klinedinst Running
November 15, 2025 at 8:51 PM
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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
Rev. Jesse Jackson, a civil rights leader, with a caption announcing his diagnosis with PSP.
November 13, 2025 at 9:12 PM
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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
Webinar announcement from AFTD titled "Supporting FTD Care Partners with Individual Therapy: Approaches and Key Considerations." Features date and time details, CEC credit information, and a photo of Stephanie Muskat, MSW, RSW, noted as an award-winning registered social worker and psychotherapist, and the founder of Compassion in Caregiving
November 10, 2025 at 5:13 PM
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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
Group of healthcare professionals with the following words 'Dear HelpLine: Find the Helpers'
November 8, 2025 at 6:56 PM
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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
Promotional image for a podcast featuring AFTD Ambassador Dawn Kirby, described as a "Protective Mama Bear," smiling and standing next to the text announcing her interview.
November 6, 2025 at 4:10 PM
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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
Webinar announcement from AFTD titled "Supporting FTD Care Partners with Individual Therapy: Approaches and Key Considerations." Features date and time details, CEC credit information, and a photo of Stephanie Muskat, MSW, RSW, noted as an award-winning registered social worker and psychotherapist, and the founder of Compassion in Caregiving
November 5, 2025 at 4:05 PM
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🧠 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
Photo 1 showing how FTD is a progressive disease Photo 2 showing how FTD is a progressive disease Photo 3 showing how FTD is a progressive disease Photo 4 showing how FTD is a progressive disease
November 4, 2025 at 6:19 PM
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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
'From One Family's Struggle: A Vision for Hope' featuring a photo of Helen-Ann Comstock 'When the Changes Began' featuring a photo of Helen-Ann and the Comstock family 'Hope Across the Ocean' featuring a photo of Switzerland on a map 'From Isolation to Action' featuring a photo of Helen-Ann hugging a person
November 3, 2025 at 6:10 PM
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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
Inspirational quote from The Better Man Project on a teal background, reading "Even if you shake, a step is still a step. Continue to be brave enough to walk your path." Accompanied by the text "Messages of HOPE" and the hashtag "NationalFamilyCaregiversMonth" along with the AFTD logo.
November 2, 2025 at 6:37 PM
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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
Person sitting on the couch and reading a digital tablet displaying information about 'Life After an FTD Diagnosis' for National Family Caregivers Month.
November 1, 2025 at 9:08 PM
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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
Image shows three individuals consulting with each other with the following 'Tips & Advice, New Recommendation: Expanding Genetic Counseling and Testing for People Diagnosed with FTD.' The logo for AFTD is visible in the corner.
October 31, 2025 at 8:50 PM
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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
Deb Jobe, co-chair of the AFTD Persons with FTD Advisory Council sitting on a rock, smiling and wrapped in a checkered blanket. The image is accompanied by text, "A Rose with Pink Petals: How FTD Revealed Deb Jobe's Hidden Artist." Photo courtesy of Deb Jobe, via brainandlife.org.
October 30, 2025 at 8:48 PM
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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
Promotional banner for Alector Clinical Trial Results Townhall on Thursday, November 6, 2025, at 3:00 p.m. ET, featuring Carmela Tartaglia and Penny Dacks from The Association for Frontotemporal Degeneration. Includes headshots and titles of the speakers.
October 30, 2025 at 3:49 PM
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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.
Promotional image by The Association for Frontotemporal Degeneration displaying a diverse group of workers in various professional settings, including military personnel and construction workers with the Combined Federal Campaign logo with number 20444 featured prominently.
October 29, 2025 at 5:01 PM
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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
Webinar announcement from AFTD titled "Supporting FTD Care Partners with Individual Therapy: Approaches and Key Considerations." Features date and time details, CEC credit information, and a photo of Stephanie Muskat, MSW, RSW, noted as an award-winning registered social worker and psychotherapist, and the founder of Compassion in Caregiving
October 28, 2025 at 6:50 PM
theaftd.bsky.social
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
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Here’s a huge shout-out to our incredible fundraisers who took it to the next level by raising funds and awareness! Our fundraising volunteers, like Carrie, Sherlin, and Dawn, help drive research, raise awareness, and support families facing FTD, and you can too!

Learn more: https://bit.ly/4oq0AX3
Photos from AFTD Independent Events held in October 2025_1 Photos from AFTD Independent Events held in October 2025_2 Photos from AFTD Independent Events held in October 2025_3 Photos from AFTD Independent Events held in October 2025_4
October 25, 2025 at 8:52 PM
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From chili contests to cookbook clubs, bake sales to beer tastings, all of our Food for Thought hosts served hope.

Thank you for making our 13th Food for Thought so incredible with your creativity and passion. Together, we've raised more than $148,000 and counting to advance AFTD's mission.
TIMFEST's Food For Thought 2025 Fundraiser Gary's FUB Team and AFTD Ambassador Nancy Anderson's Food For Thought 2025 Fundraiser Colleen Franzreb's Food For Thought 2025 Fundraiser Hops for Hope's Food For Thought 2025 Fundraiser
October 23, 2025 at 3:52 PM
theaftd.bsky.social
This National Estate Planning Awareness Week (Oct. 20–26), learn how to navigate the legal, financial, and insurance steps that support quality of life and peace of mind.

Learn more: https://bit.ly/4n0RHkR
AFTD's promotional graphic for National Estate Planning Awareness Week Information on legal protection from AFTD Information on legal decision-making powers from AFTD Information on financial assistance from AFTD
October 22, 2025 at 4:08 PM
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A study finds that epilepsy symptoms are more common in people with #FTD than those with #Alzheimer’s, and that epilepsy can start up to 10 years before FTD is diagnosed.

Click here to learn more: https://bit.ly/3Wvktj7
Two researchers discussing data in a laboratory, with a presentation slide titled "Epilepsy More Common in FTD than Alzheimer's, Study Finds" from JAMA Neurology.
October 18, 2025 at 8:22 PM
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Carrie’s words embody one of the key priorities in AFTD’s 2025–2028 Strategic Plan: advancing awareness and advocacy to build a more understanding and supportive world for those impacted by FTD.

Learn more about our new strategic plan: https://bit.ly/42VR7ht
Image featuring AFTD Ambassador Carrie Edwards, with a quote about her motivation to volunteer in memory of her husband, Steven. The background is red with the AFTD's 2025-2028 Strategic Plan banner at the bottom.
October 17, 2025 at 8:02 PM
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Amanda Gleixner, PhD, attended the Amyotrophic Lateral Sclerosis (ALS) Nexus, held in Dallas, TX, in August.

Learn more: https://bit.ly/46O8W4o
AFTD staff stand beside a colorful poster titled "Proposal & Rationale" at the 2025 ALS Nexus in Dallas.
October 16, 2025 at 3:46 PM
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“Listening to other people go through feelings of loneliness, disbelief, and the horror of this disease, and comparing it to my own, has helped me. – Kathleen

Support groups offer connection, understanding, and the chance to both receive and give support.

👉 Learn more: https://bit.ly/4mlitEz
October 15, 2025 at 3:46 PM