The Association For Frontotemporal Degeneration
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The Association For Frontotemporal Degeneration
@theaftd.bsky.social
120 followers 34 following 100 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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This #NationalFamilyCaregiversMonth, members of the FTD community shared what they’ve learned along the way. From finding flexibility to accepting help, these insights remind us that caregiving is not about perfection. It’s about compassion, resilience, & support. Learn more: https://bit.ly/43qrxRZ
Graphic 1 featuring Lessons Learned as an FTD Caregiver during National Family Caregivers Month Graphic 2 featuring Lessons Learned as an FTD Caregiver during National Family Caregivers Month Graphic 3 featuring Lessons Learned as an FTD Caregiver during National Family Caregivers Month
November 26, 2025 at 4:03 PM
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Each year, our community comes together on #GivingTuesday to make a difference for families facing FTD.

Join us next week on 12/2, and every gift will be matched up to $25,000, thanks to AFTD’s Board Alumni network.

❤️ Give for Families. Give for Hope. #GiveForFTD: https://bit.ly/4o5NZqM
Promotional image for Giving Tuesday, featuring a date of December 2, 2025, with a red heart graphic, and the logo of AFTD at the bottom. Give for Families featuring a photo of AFTD Ambassador Spencer Cline and his family Give for Hope featuring an AFTD support group photo Give for FTD featuring a photo of AFTD's Persons with FTD Advisory Council
November 25, 2025 at 6:13 PM
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The Fall 2025 issue of AFTD Insights is here!

In this issue, you'll find updates on critical FTD research, stories from families and volunteers, the latest on federal funding efforts, event highlights, and news.

📬 Read now: https://bit.ly/3XKfYS0
Photo from the 3rd Annual FTD Research Roundtable Meeting, with an audience watching a speaker at a podium, featured in the AFTD Insights newsletter, Fall 2025 edition.
November 24, 2025 at 7:02 PM
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When living with FTD, the holidays don’t have to look the same to still hold meaning. ❤️

This week’s Help & Hope shares practical tips and real stories from families finding new ways to connect, adapt, and care for one another during the season.

Learn more: https://bit.ly/49yhxtM
Family enjoying a festive holiday meal together, with the text 'Tips & Advice - Finding Your Way Through the Holidays with FTD' displayed.
November 23, 2025 at 6:22 PM
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Incredible work from our community! ❤️

🏃‍♀️ Kendra H. raised $5,862 at the Niagara Falls Half Marathon

🏃‍♀️ Kelly C. & Glenna S. raised $10,000+ running the Detroit Marathon

👉 Feeling inspired? You can host your own fundraiser and make a meaningful impact: https://bit.ly/48oOOq1
Photos from Kendra Hatfield who ran at the Niagara Falls Half Marathon and raised $5,862 for AFTD Photo 1 from Kelly Collins and Glenna Sikdar who ran at the Detroit Marathon and raised over $10,000 for AFTD Photo 2 from Kelly Collins and Glenna Sikdar who ran at the Detroit Marathon and raised over $10,000 for AFTD
November 22, 2025 at 7:45 PM
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In our last fiscal year, we paved a path forward - raising FTD awareness, driving research, supporting people and families, educating healthcare professionals, and leading advocacy efforts.

🔴 Read more and explore stories from our community in our 2025 Impact Report: https://bit.ly/49pAsqz
Cover Photo for AFTD's 2025 Impact Report AFTD's 2025 Impact Report featuring a section on Awareness & Advocacy AFTD's 2025 Impact Report featuring a section on Research & Education AFTD's 2025 Impact Report featuring a section on Support
November 21, 2025 at 7:18 PM
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Join us for an inside look at the progress shaping FTD research. On 12/10 at 3 pm, AFTD experts Dr. Penny D. and Dr. Chiadi O. will discuss advancements from 2025 & the momentum driving us toward effective treatments in the years ahead. Sponsored by Passage Bio

Register now: https://bit.ly/4rfNmOq
Promotional image for a webinar titled "FTD Research 2025: Paving the Path Towards Effective Treatments" scheduled for December 10, 2025, featuring Penny Dacks, AFTD Chief Scientific Officer and FTD Disorders Registry President, and Chiadi Onyike, AFTD's Medical Advisory Council Chair and Johns Hopkins University's Frontotemporal Dementia and Young-Onset Dementias Clinic Director. Sponsored by Passage Bio.
November 20, 2025 at 9:09 PM
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Caring for someone with FTD can be deeply meaningful, but it can also be stressful. Taking time to care for yourself helps you show up stronger for those you love. ❤️

Explore ways to manage stress, like joining a support group, journaling, or asking for help. Learn more: https://bit.ly/441AUYl
Banner by AFTD displaying "Ways to Manage Stress of FTD" with illustrations of various activities: joining an AFTD support group, journaling, exercising, asking for help, spending time with family or friends, and getting involved as an AFTD volunteer. The background is teal with white text and the hashtag "#NationalFamilyCaregiversMonth" is included.
November 20, 2025 at 4:10 PM
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A study led by AFTD grantee Dr. Tanav Popli finds high rates of diagnostic mismatching of #PSP cases in a national data set.

Click here to learn more: https://bit.ly/3JKIwYt
Medical professionals analyze a brain scan on a monitor, with text that says 'Study Investigates if Clinical PSP Diagnoses Match Neuropathology in a National Dataset'
November 19, 2025 at 8:05 PM
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FTD is still too often misunderstood, even in healthcare, leaving families without the support they urgently need. In this clip, AFTD’s Meghan B. shares why your voice matters & how advocacy can transform the future for people living with FTD & their care partners.

Watch now: https://bit.ly/3WqDUcE
November 19, 2025 at 5:10 PM
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Amylyx Pharmaceuticals announced that it is ending its phase 2b trial for #PSP after test group results turned out similarly to the placebo group. We’re grateful for Amylyx’s work furthering our understanding of PSP’s biology.

Learn more: https://bit.ly/43taApW
Banner image featuring a laboratory setting with a person examining samples, and text stating 'Amylyx Pharmaceuticals Ends PSP Trial of AMX0035', along with the Amylyx logo.
November 18, 2025 at 7:46 PM
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Holidays can feel different when FTD is part of the picture. These Thanksgiving tips can help create a calmer, more comfortable day for care partners, guests, & the persons diagnosed.

Looking for more tips? Join an AFTD support group to learn from others who truly understand: https://bit.ly/4i0XvtL
AFTD graphic featuring Thanksgiving tips for managing Frontotemporal Degeneration. Includes text and a basket of pumpkins. Thanksgiving tips for guests Thanksgiving tips for care partners Thanksgiving tips for the persons diagnosed
November 18, 2025 at 4:10 PM
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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.

📩 [email protected]
📞 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