The Desmoid Project

This , our hearts are in the Pacific Northwest.

Today, we welcome a new group of patients to Lake Crescent in Washington for The Desmoid Project Patient Retreat — an immersive week of connection, reflection, learning, and renewal.

One past participant shared:
"The retreat was more transformative than I could have ever anticipated. I feel newly prepared to handle my desmoid tumor diagnosis and the other stressors in my life in a way I don't know if I've ever felt before."

As this next retreat begins, we're holding space for the conversations, connections, moments of insight, and opportunities for healing that may unfold in the days ahead.

We're also deeply grateful to the partners and supporters who help make experiences like this possible: thedesmoidproject.org/partners

As we begin this week's retreat, we know many members of our community are hoping to attend a future one. If that's you, we invite you to complete the retreat interest form on our website so you'll be among the first to hear when the next retreat lottery opens: thedesmoidproject.org/patient-retreat

Being understood doesn't take away the hard things. But it can make them feel less heavy to carry.

For many people living with a desmoid tumor, one of the most difficult parts isn't just the diagnosis itself—it's feeling like no one else truly understands what they're navigating.

Connection doesn't solve everything. It doesn't remove uncertainty or answer every question. But being able to share space with people who "get it" can bring comfort, validation, and a reminder that you don't have to carry it all alone.

This , we're reflecting on the power of being seen and understood.

If you're looking for that kind of connection, registration is now open for our next 8-week Patient Support Group beginning July 13.

Learn more and register: thedesmoidproject.org/support-groups

“This disease can feel so lonely, but after this experience, I feel seen and understood.” — Support Group Participant

If you're looking for a space where you can connect with others who truly understand life with a desmoid tumor, registration is now open for our next 8-week Patient Support Group.

This therapist-led group offers a steady, supportive space to share experiences, build coping tools, and find connection in community.

July 13 – September 7
Mondays, 5:30 - 7 pm ET
Virtual, no cost, and trauma-informed

Facilitated by licensed professionals who are also living with a desmoid tumor, this program is designed to help participants feel seen, supported, and less alone.

Learn more and register: thedesmoidproject.org/support-groups

Sleep and rest can become surprisingly complicated when you're living with a desmoid tumor.

Pain, anxiety, and treatment side effects can all affect your ability to rest and recharge. And when sleep is disrupted, it can impact nearly every part of daily life.

We're holding an Integrative Health Gathering Tree session focused on Sleep and Rest — the first in a new series of topic-specific Integrative Health sessions created in response to community interest. This is a supportive space to explore the role of rest in wellbeing and connect with others navigating similar challenges.

This session will be led by a certified professional and co-facilitated by Jessie Clark, a desmoid patient and integrative and functional medicine coach (.align), offering both lived experience and grounded support.

No pressure to explain. No comparisons. Just space to reflect, share, and learn in community. If this resonates, we'd be honored to hold space with you.

Register for this session: thedesmoidproject.org/?p=5121
Learn more: thedesmoidproject.org/the-gathering-tree

The overwhelm that can come with a new desmoid tumor diagnosis is hard to put into words.

There can be a lot to carry in the first year — medical language that feels unfamiliar, decisions that feel heavy, ongoing uncertainty, and emotions that shift from one day to the next.

On June 4 at 6 pm ET, we’re holding a Gathering Tree session for people diagnosed within the past year. This is a gentle, supportive space to connect with others who understand the challenges of this early chapter.

The session is facilitated by a certified professional who is also living her own long-term desmoid journey, bringing both trauma-informed support and lived experience into the space.

No pressure to explain everything. No expectation to have the “right” attitude. Just space to talk openly, listen, ask questions, and feel less alone.

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

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

Our new website is officially live!

You can now:
• Easily browse upcoming Gathering Tree sessions and support groups
• Access resources for patients, caregivers, and professionals
• Learn more about trauma-informed care and mental health support within the desmoid community

As part of , we’re especially proud to share a growing collection of downloadable mental health resources created specifically for people living with a desmoid tumor, caregivers, and professionals.

You can explore the website now at thedesmoidproject.org

“Hope can be as simple as knowing you don’t have to face this alone.”

In a rare disease community, connection often becomes a source of hope. Being seen, understood, and supported can shift even the hardest days.

This , we’re holding onto the kind of hope that grows in community.

If you’ve been looking for a place to feel more connected, understood, or supported, you are welcome here.

Supporting someone living with a desmoid tumor can bring a lot to carry — emotionally, mentally, and physically.

Caregivers are often navigating uncertainty, decision fatigue, worry, advocacy, and the ongoing balancing act of caring for someone they love while trying to care for themselves, too.

On Thursday, May 21, we’re holding a Gathering Tree session for caregivers. This is a supportive space to connect with others who understand these experiences firsthand.

No pressure to explain. No expectations to hold it all together. Just space to share honestly, listen openly, and feel supported in community.

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

Connection doesn’t only happen in big moments.
It’s built over time, in small, meaningful ways.

Our e-newsletter is one way we stay connected—sharing resources, upcoming programs, and ways to feel supported.

We invite you to sign up at thedesmoidproject.org.
Because strength grows through connection.

There’s an important difference between positivity and toxic positivity.

When someone is facing a serious diagnosis like a desmoid tumor, words matter.

Positivity acknowledges that something is difficult while still offering hope, support, or encouragement. Toxic positivity pushes painful emotions aside or suggests that someone should focus only on the positive.

Supportive positivity sounds like:
“This is hard. How can I support you?"
“You don’t have to be strong all the time. It’s okay to have hard days.”

Minimizing toxic positivity sounds like:
“Just stay positive, and you’ll heal!”
“Everything happens for a reason.”

At The Desmoid Project, we believe people deserve space for both hope and hard emotions. Real support does not mean pretending things are okay.