The Desmoid Project

10/28/2026

When you’re living with a desmoid tumor, the places where you spend your time can take on new importance. The spaces around us can affect how supported, comfortable, and grounded we feel from day to day.

Our environments can influence stress levels, energy, comfort, rest, and overall wellbeing. Small changes to our surroundings can sometimes help create a greater sense of ease, support, and connection in daily life.

On Thursday, November 12 at 12 pm ET (5 pm GMT), we're holding a Gathering Tree session focused on Physical Environment — part of our ongoing Integrative Health series created in response to community interest. This is a supportive space to explore how your home, work, outdoor, and other everyday environments may impact wellbeing, and to connect with others navigating similar experiences.

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.

Visit our website or scan the QR code to register.
Learn more: thedesmoidproject.org/the-gathering-tree

10/26/2026

Living with a desmoid tumor can mean navigating uncertainty that doesn’t simply end after diagnosis.

When scans, symptoms, and difficult decisions continue, the emotional impact can continue, too. You may find yourself feeling on edge, struggling to relax, or wondering why it still feels so hard.

What if it isn’t about simply failing to adjust?

When something continues to affect your life, it makes sense that your mind and body will continue to respond. Your experience deserves to be acknowledged, not minimized.

At The Desmoid Project, we believe support begins with understanding the whole person, including the emotional weight that others may not see.

Our resource, "When Living With a Desmoid Tumor Feels Like More Than 'Adjustment,'" explores this experience and offers a different perspective on what you may be feeling.

You deserve to feel seen, understood, and supported.

10/22/2026

Perhaps the bravest thing a tree does is let go of what it spent all year growing. 🍂

We spend so much of our lives growing, reaching, and holding on. But nature reminds us that letting go can be part of the journey, too.

Living with a desmoid tumor can change so much about the lives we imagined for ourselves. Sometimes, strength means giving ourselves permission to rest, to change, and to release the expectations we no longer need to carry.

Growth doesn't always mean pushing forward or becoming more. Sometimes, it means making space for who we are now and allowing ourselves to move through each season in our own time.

Wherever you are in your journey, remember that you don't have to hold on to everything to honor how far you've come.

10/21/2026

Motherhood with a desmoid diagnosis can feel heavy in ways that are hard to name.

On Thursday, November 5 at 12 pm ET (5 pm GMT), we’re gathering for
our next Moms With Desmoids session as part of The Gathering Tree.

This is a gentle, supportive space to connect with others who understand the balance of caregiving, uncertainty, strength, and exhaustion that can coexist all at once. The session will be led by a certified professional and co-facilitated by Amy Beitz, a desmoid patient with lived experience navigating desmoids and family planning.

You’re welcome to share, or simply listen—whatever feels right for you.
If this resonates, we’d be honored to hold space with you.

Visit our website or scan the QR code to register.
Learn more: thedesmoidproject.org/the-gathering-tree

10/19/2026

When stress or overwhelm starts to build, you may notice it in your body before you can put it into words.

Tension in your shoulders. Restlessness in your legs. A feeling of being wound up, stuck, or unable to settle.

Today’s "Calm in the Chaos" practice is Body Movement.

Stress isn’t just something we think or feel. It can show up physically, too. Gentle movement can help release tension, move through stress, and reconnect with your body in supportive ways.

You might try:
- Stretching your shoulders, neck, or back
- Taking a short walk
- Trying a few gentle yoga poses
- Rocking slowly back and forth
- Putting on a favorite song and dancing
- Shaking out your hands, arms, or legs to release tension

For some people, more vigorous movement can also help improve mood, reduce stress, and support overall brain and body health over time.

Movement doesn’t have to be intense, structured, or productive. You don’t need to complete a workout or reach a goal. Sometimes, it’s simply about giving your body an opportunity to release some of what it’s holding and feel a little less stuck.

Choose a kind of movement that feels supportive for your body today. And remember, you can start small, adjust as needed, or stop whenever you want.

This practice comes from our free resource, Calm in the Chaos: Tools to Regulate Your Nervous System, created by our Clinical Director, Ashley Williams, LCSW. To explore more gentle, evidence-informed ways to support yourself through medical uncertainty, visit the Mental Health Resources section of our website.

10/15/2026

“Sometimes we need support. Sometimes we have the chance to offer it. Both matter.”

Sometimes, connecting with someone who understands can make a difficult journey feel a little less overwhelming. And sometimes, our own experiences can become a source of comfort and encouragement for someone else.

Through our partnership with Imerman Angels, The Desmoid Project is launching a new peer-to-peer mentorship program for both patients and caregivers to help members of the desmoid community connect through shared experiences.

Right now, we're looking for volunteers who are ready to offer understanding, a listening ear, and support to someone navigating a similar journey. Your experience could make a meaningful difference.

Interested in becoming a mentor? Learn more: thedesmoidproject.org/mentorship

10/14/2026

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.

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.

Visit our website or scan the QR code to register.
Learn more: thedesmoidproject.org/the-gathering-tree

10/12/2026

Exercise can feel different when you’re living with a desmoid tumor.

Pain, physical limitations, fatigue, treatment effects, and uncertainty about what your body can tolerate can make it difficult to know where to start—or how to return to movement after time away.

This , we’re sharing a recording from our Gathering Tree session, "Exercise and Desmoids: How and When to Get Started or Get Back to It,” led by Becky Hughes, a person affected desmoid tumor and a specialist personal trainer.

Becky shares insights on navigating exercise with desmoid tumors and finding a way forward that respects your body and your individual experience.

This recording captures the beginning of the session. After Becky’s presentation, attendees had the opportunity to connect with one another, ask questions, and share their experiences in a supportive community of people who understand.

Watch the recording: youtube.com/watch?v=lP37vhjMHBQ

Explore our free, confidential Gathering Tree virtual support groups at thedesmoidproject.org/the-gathering-tree

Special thanks to Immunome for sponsoring this video.

“Exercise and Desmoids: How and When to Get Started or Get Back to ...

10/08/2026

Some days are harder than others. That doesn't erase the progress you've made or the strength you've built along the way.

This , we're offering a little encouragement for the days when moving forward feels harder than expected.

10/07/2026

Because desmoid tumors more often affect women, men living with this rare disease can experience an added layer of isolation. It can be harder to find others who share your experience.

Our next Gathering Tree session on Thursday, October 22 at 3 pm ET (7 pm GMT) creates a dedicated space for men living with desmoid tumors to connect.

There’s no pressure to explain. No comparisons. No expectations about what you should share. Just room to show up as you are, listen, connect, and be supported by people who understand.

If you’ve been looking for a space to connect with other men who understand this experience, we’d be honored to have you join us.

The session is facilitated by a certified professional who is also a desmoid patient, bringing both trauma-informed support and lived experience.

Visit our website or scan the QR code to register.
Learn more: thedesmoidproject.org/the-gathering-tree