The Desmoid Project

04/28/2026

Living with an extra-abdominal desmoid can shape how you move through daily life—sometimes in visible ways, and sometimes in ways others can’t see. It can carry layers of pain, uncertainty, and loss that are difficult to put into words.

On Thursday, May 7, we’re offering a Gathering Tree session for those with extra-abdominal desmoid tumors. This is a supportive space to connect with others who understand the realities of chronic pain, mobility challenges, medical uncertainty, and the emotional weight of a body that doesn’t always cooperate.

There’s no need to explain or compare. Just space to come as you are, to listen, and to be alongside others who truly understand.

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

04/23/2026

We’re honored to share that The Desmoid Project is now an official member of the Sarcoma Patient Advocacy Global Network - SPAGN, a global network of patient advocacy organizations working to improve care and outcomes for people affected by sarcomas and rare cancers.

This step reflects something we deeply believe—connection matters. Not just within our own community, but across organizations working to support people navigating rare diseases.

We’re grateful to be part of a growing network committed to shared learning, collaboration, and amplifying patient voices.

sarcoma-patients.org/usa-the-desmoid-project

04/20/2026

You deserve to heal.

Healing isn’t something you have to earn.
It doesn’t take away from anyone else.
It doesn’t mean you’re forgetting what you’ve been through.

Living with a desmoid tumor can bring so many layers—grief, uncertainty, fear, and change. And sometimes, when moments of light or relief begin to return, they can come with unexpected feelings too.

You’re allowed to feel joy again.
It’s okay to move forward, in your own time and in your own way.

Moving forward doesn’t erase what’s been hard. It can exist alongside it. And choosing healing can also be a way of carrying forward hope, for yourself and for others.

This , we’re holding space for healing without pressure, and for whatever that looks like for you.

If you’re looking for opportunities for healing, our June 15-18 Patient Retreat lottery is open through this Wednesday, April 22. Learn more and sign up here: bit.ly/TDPretreat

04/16/2026

Living with a desmoid tumor often means learning to navigate the unknown. And still, hope can exist here.

Not as pressure to feel positive, but as a quiet, steady belief that your story is still unfolding.

This , we’re holding space for hope in all its forms—especially the kind that exists right alongside uncertainty.

04/13/2026

“For the first time in a while, I didn’t feel alone.”

One participant shared this after attending our Moms With Desmoids session—and it reflects something we hear often.

Motherhood alongside a desmoid diagnosis can feel complex in ways that are hard to name.

On Thursday, April 23 at 12 pm ET, we’re gathering for our next Moms With Desmoids session as part of The Gathering Tree.

This is a space to be with others who understand the balance of caregiving, uncertainty, strength, and exhaustion that can all exist at once. You’re welcome to share, or simply listen—whatever feels right for you.

No pressure. No expectations. Just a space for connection and being met where you are.

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

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

04/08/2026

June 2026 Desmoid Patient Retreat:
Many of you have been waiting for this—and we’re so glad to share it.

The lottery for our next Patient Retreat is now open!
Apply by Wednesday, April 22, 2026

From June 15–18, we’ll gather at Lake Crescent in Port Angeles, Washington, for an immersive experience created for adults living with a desmoid tumor. This retreat offers a unique opportunity for healing, connection, and hope in a supportive, patient-centered environment.

What to Expect:
- Fully funded retreat with semiprivate lodging, meals, activities, swag bag, round-trip transportation from the Seattle airport, and a travel stipend of up to $500
- Workshops on resilience, healing, sound therapy, nature connection, and more
- A supportive community led by experienced facilitators: Julia Anderson, HLC, LMT; desmoid patient Dana Lawson, MS, CTP; and desmoid patient Ashley Williams, LCSW, CCTP-II

Because we keep this retreat intentionally small, participation is offered through a random lottery.

How to Apply:
1️⃣Complete the lottery application by April 22, 2026
2️⃣Schedule a 15-minute consult by April 24
3️⃣Wait for the random name draw results on April 27

➡️Start here: bit.ly/TDPretreat

This retreat is more than a getaway—it’s a chance to find peace, empowerment, and connection. Don’t miss this incredible opportunity to recharge in the beauty of the Olympic Peninsula with a community that truly understands.

04/07/2026

Health is more than physical.

It’s emotional. It’s relational. It’s feeling seen and supported.

This World Health Day, we’re recognizing the importance of whole-person care—where mental health, community, and connection are part of the conversation.

Because true health includes mental well-being, community, and care that meets you where you are.

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.⁠