The Desmoid Project

04/06/2026

If you’ve been feeling the weight of doing this on your own, you’re not alone.

“The desmoid tumor journey can be so isolating, but it's a huge relief to find a community of people that can relate to your struggles and provide support.” - Patient Support Group Participant

We still have a few spots available in our next 8-week patient support group, which begins Wednesday, April 15 at 11 am ET. This is a steady, therapist-led space to connect and build supportive tools alongside others living with a desmoid tumor.

If this feels like something you might need right now, you’re invited to join us.

Register here: bit.ly/TDPsupportgroup

04/02/2026

Men with desmoid tumors can face a different kind of isolation. In a condition that more often affects women, there can be an added sense of being overlooked, misunderstood, or unsure where you fit within the broader desmoid community.

On Thursday, April 9, we’re holding a Gathering Tree session for men living with desmoid tumors. This is a supportive space to connect with others who share this experience—creating room to talk about the unique challenges, identity shifts, and emotional realities that may not always be visible or acknowledged.

There’s no pressure to explain. No comparisons. Just room to show up as you are, listen, and be supported by people who truly understand.

If this resonates, we’d be honored to hold space with you.
Learn more and sign up here: bit.ly/TDPprograms

03/31/2026

We’re grateful for the opportunity to spend time in shared learning and connection with the team at The Desmoid Tumor Research Foundation- DTRF.

Yesterday, our Clinical Director, Ashley Williams, led a trauma-informed training bringing together both DTRF and The Desmoid Project teams. It was a meaningful space to explore how we can continue showing up for this community with greater awareness, intention, and care.

When organizations come together like this, it strengthens how we show up for everyone living with a desmoid tumor. We’re thankful to DTRF for their partnership and for their ongoing commitment to the desmoid community.

We’re honored to partner in this way and to continue offering this work to patient-facing organizations committed to supporting individuals navigating chronic illness and medical trauma.

This is what Strength Through Connection looks like.

03/27/2026

It can feel especially disorienting to navigate a desmoid diagnosis during your teen or young adult years when life is already full of change, identity-building, and big transitions.

Next Thursday, April 2, we’re holding a Gathering Tree session for teens and young adults living with desmoid tumors. This is a supportive space to connect with others in a similar stage of life—led by a certified professional and co-facilitated by Maggie Mae Thompson, who was diagnosed at age 15 with a desmoid tumor.

Together, we’ll create space to talk about what it means to navigate school, early career, relationships, independence, and uncertainty alongside a desmoid diagnosis.

There’s no pressure to explain. No comparisons. Just room to show up as you are, listen, and be supported by people who truly understand.

If this resonates, we’d be honored to hold space with you.
Learn more and sign up here: bit.ly/TDPprograms

03/26/2026

We’re deeply grateful for this thoughtful, informative conversation hosted by The Desmoid Tumor Research Foundation- DTRF.

If you missed the recent webinar on desmoid tumor diagnosis and classification, it’s truly worth a watch. The discussion offers meaningful insight into how these distinctions shape both treatment decisions and the experience of living with a desmoid tumor.

We’re especially honored that our own Ashley Williams brought the mental health and lived experience perspective to this multidisciplinary panel.

We’re continually grateful for DTRF’s commitment to providing high-quality education and resources to the desmoid community.

Alongside the mental health and community support offered by The Desmoid Project, partnerships like this reflect what Strength Through Connection truly looks like—ensuring that patients and caregivers have access to both trusted information and meaningful support as they navigate all that comes with a desmoid diagnosis.

🎥 A recording of our recent virtual event, "How Desmoid Tumors are Classified and Why It Matters for Patients" is ready to watch!

📣 Spread the word by sharing this recording with your social networks today: https://vimeo.com/1176968287
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💡Desmoid tumors (also known as aggressive fibromatosis, desmoid fibromatosis, and desmoid-type fibromatosis) do not metastasize. They are classified by the World Health Organization (WHO) as “Intermediate (locally aggressive)” soft tissue tumors. They do not fall under “Benign” or “Malignant” classifications. Learn more about desmoid tumors here: https://bit.ly/DTRF-SpreadtheWord-2026
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🔗 Learn more about the World Health Organization's (WHO) classification of desmoid tumors, which is listed under Table II: Fibroblastic/Myofibroblastic Tumours: https://pmc.ncbi.nlm.nih.gov/articles/PMC8167394/
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⭐ Special thank you to Dr. Gounder, Ashley Williams, LCSW and Dr. Agaram for their willingness to discuss this important topic and answer questions from the desmoid community.

💜 Thank you to our webinar sponsor, SpringWorks Therapeutics, for their continuous support of desmoid tumor educational content.⁠

03/24/2026

📣 It's not too late to join us TODAY for an important conversation about "How Desmoid Tumors are Classified and Why It Matters for Patients" on Tuesday, March 24th @ 6PM EST. Spread the Word by sharing this post with your social networks today!⁠
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🔗 Learn more & register: https://bit.ly/2026-SpreadtheWord-Webinar (link in bio)⁠
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⭐ Throughout the virtual event, we'll explore desmoid tumor diagnosis, pathology classification, and the real-world impact these distinctions have on treatment decisions and patient wellbeing. This multidisciplinary discussion will examine how desmoid tumors are identified and categorized, what that means for planning treatment and care, and how classification can shape the patient experience from diagnosis forward.⁠
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🔗 Learn more about desmoid tumors here: https://bit.ly/DTRF-SpreadtheWord-2026 (link in bio)⁠
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💜 Thank you to our webinar sponsor, SpringWorks Therapeutics, for their continuous support of desmoid tumor educational content.⁠
⁠
💡 Desmoid tumors (also known as aggressive fibromatosis, desmoid fibromatosis, and desmoid-type fibromatosis) do not metastasize. They are classified by the World Health Organization (WHO) as “Intermediate (locally aggressive)” soft tissue tumors. They do not fall under “Benign” or “Malignant” classifications.

03/23/2026

Living with Familial Adenomatous Polyposis (FAP) and desmoid tumors can bring added layers of complexity—difficult medical decisions, severe complications, and the weight of navigating more than one rare condition at once. It’s a path that can feel overwhelming in ways others may not fully see.

On Thursday, March 26, we’re holding a Gathering Tree session for individuals living with FAP and desmoid tumors. This is a gentle, supportive space to connect with others who understand the realities of managing a rare inherited disorder alongside a desmoid diagnosis.

There’s no pressure to explain. No comparisons. Just room to show up as you are, listen, and be supported by people who truly understand.

If this resonates, we’d be honored to hold space with you.
Learn more and sign up here: bit.ly/TDPprograms

03/16/2026

We’re grateful to see conversations about desmoid patient care continuing to grow in thoughtful, multidisciplinary ways.

On Tuesday, March 24 (6–7 PM ET), The Desmoid Tumor Research Foundation- DTRF is hosting an educational webinar exploring how desmoid tumor diagnosis and classification shape treatment decisions and patient wellbeing.

We’re especially honored that Ashley Williams, LCSW, CCTP-II, Clinical Director and Co-Founder of The Desmoid Project, will be part of the expert panel, bringing a perspective on the mental health and lived experience impacts that often accompany a desmoid diagnosis.

Moments like these remind us that Strength Through Connection extends beyond patients — it also happens when clinicians, researchers, advocates, and patient leaders come together to better understand the full experience of living with a desmoid tumor.

If this conversation would be meaningful for you, we encourage you to register and submit your questions for the panel: bit.ly/2026-SpreadtheWord-Webinar

03/12/2026

For many people living with a desmoid tumor, the emotional weight of diagnosis can feel isolating. But when people come together in spaces where they are understood, something begins to shift.

Stories are shared. Strength is rediscovered. Hope grows.

That’s the heart behind our Patient Support Groups — creating spaces where individuals living with a desmoid tumor can process, connect, and build resilience together.

Registration is now open for our next group beginning April 15.
Learn more and register: bit.ly/TDPSupportGroup

03/09/2026

We're excited to announce that our April Support Group registration is now open!

Living with a desmoid tumor can feel overwhelming and isolating. Our upcoming support group series offers a supportive space to share experiences, learn coping tools, and connect with others who understand.

April 15 – June 3
Wednesdays, 11 am – 12:30 pm ET
Virtual, no cost, and trauma-informed

Led by certified professionals who are also desmoid patients, this 8-week program helps you feel seen, supported, and empowered.

Find Strength Through Connection:
Sign up today: bit.ly/TDPsupportgroup

03/06/2026

Living with an intra-abdominal desmoid tumor can mean carrying a lot that others can’t see—unpredictable complications, complex medical decisions, and the quiet weight of uncertainty about what’s happening deep inside your body.

On Thursday, March 12, we’re holding a Gathering Tree session for people with intra-abdominal desmoid tumors. This is a gentle, supportive space to connect with others who understand the realities of navigating high-risk tumor locations and the emotional toll of living with a condition that often feels both serious and invisible.

There’s no pressure to explain. No comparisons. Just room to show up as you are, listen, and be supported by people who truly understand.

If this resonates, we’d be honored to hold space with you.

Learn more and sign up here: bit.ly/TDPprograms