The Desmoid Project

09/09/2026

During , we’re raising awareness about the many ways living with a desmoid tumor can affect everyday life, including exercise and movement.

On Thursday, October 1 at 2:30 pm ET, we're holding a Gathering Tree session focused on Exercise and Desmoids. This is a supportive space to ask questions and connect with others navigating the unique challenges of staying active while living with a desmoid tumor.

This session, “Exercise and Desmoids: How and When to Get Started or Get Back to It,” will be co-facilitated by Becky Hughes, a desmoid patient and specialist personal trainer, offering both lived experience and professional expertise.

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

09/08/2026

When stress or uncertainty starts to feel overwhelming, sometimes your body needs something steady to focus on.

This week's "Calm in the Chaos" practice is Listening to Sound.

Sound can influence how our bodies respond to stress. Calming music, nature sounds, or a familiar voice can offer a sense of comfort and help bring our attention back to the present moment.

Try choosing a sound that feels calming, familiar, or grounding:
* Listen to a favorite song.
* Put on calming or instrumental music.
* Spend a few minutes listening to the sounds of nature.
* Listen to a familiar or comforting voice.
* Try a guided meditation or other soothing audio.
* Notice the sounds around you without trying to change them.

You don't have to find the “right” sound or make yourself feel calm.

Simply noticing what feels comforting or familiar can give your mind and body a place to pause when everything feels like too much.

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. If you'd like to explore more gentle, evidence-informed ways to support yourself through medical uncertainty, you can find it in the Mental Health Resources section of our website.

09/07/2026

Labor Day can bring up complicated feelings when a desmoid tumor has changed your ability to work.

Maybe you're working through pain or fatigue.
Maybe you've reduced your hours or are navigating accommodations.
Maybe you've had to take leave or step away from work altogether.

And sometimes, the impact goes beyond a paycheck.

Work can be connected to our sense of purpose, independence, identity, routine, and connection with others. When a long-term diagnosis changes what we're able to do, those changes can be difficult to navigate.

But your capacity to work does not determine your worth.

During Desmoid Tumor Awareness Month, we're recognizing the whole-person impact of a desmoid tumor. That means making space for the ways a diagnosis can affect not only our bodies, but also our work, our sense of self, and the lives we're trying to live.

We believe every person affected by desmoid tumors deserves to feel:
Seen. Supported. Connected.

09/03/2026

For Desmoid Tumor Awareness Month, we’re introducing Voices of Strength, a series sharing anonymous reflections from people in our community about the experiences, challenges, and sources of strength they’ve found along the way.

What does strength look like when you’re living with a desmoid tumor? Sometimes, strength is taking the first step toward connection.

Joining a support group can mean making yourself vulnerable and opening the door to a community you’ve never experienced before.

For our first Voices of Strength, we’re sharing the words of a support group participant who had never met another person with the same diagnosis before joining the group.

“I felt very empowered by the growth mindset, especially how other people have made meaning of their diagnosis or found ways to live fully regardless of their diagnosis.”

This is Strength Through Connection.

If you’re living with a desmoid tumor and looking for a space to connect with others who understand, our next 8-week Patient Support Group begins September 23. We'd be honored to hold space with you. Learn more at thedesmoidproject.org

09/02/2026

During , we’re recognizing the many ways a desmoid tumor can impact daily life and the importance of support that considers the whole person.

Living with a desmoid tumor often means paying closer attention to what helps you feel nourished, supported, and able to move through daily life.

With so much information available—and so many opinions about what you "should" be doing—it can be difficult to find an approach that feels realistic, supportive, and aligned with your own needs and values.

On Thursday, September 17 at 12 pm ET, we're holding a Gathering Tree session focused on Nutrition and Lifestyle — part of our ongoing Integrative Health series created in response to community interest. This is a supportive space to explore how nutrition and lifestyle practices can support overall well-being and to connect with others navigating similar questions.

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 have it all figured out. No expectations. Just space to reflect, share, and learn in community.

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

09/01/2026

September is Desmoid Tumor Awareness Month, and this year, we're looking behind the diagnosis.

A desmoid diagnosis can affect far more than physical health. It can shape mental and emotional well-being, relationships, daily life, decision-making, and our sense of safety and certainty about the future.

Some of these experiences are visible. Many are not.

Throughout September, The Desmoid Project will be exploring the full impact of living with a desmoid tumor and the importance of whole-person support.

Because awareness isn't only about knowing what a desmoid tumor is.
Awareness means seeing the whole person.

And every person affected by desmoid tumors deserves to feel:
Seen. Supported. Connected.

Follow along this month as we share education, community voices, mental health support, and stories from the people who know this experience firsthand.

08/27/2026

As Desmoid Tumor Awareness Month approaches, we're thinking about what it truly means to raise awareness.

Awareness means seeing the whole person and understanding the full impact of a desmoid diagnosis. Because what someone is carrying cannot always be measured by a scan, a treatment plan, or a milestone.

Sometimes, healing looks like being understood by someone who gets it. Having space to share what you're carrying. Finding connection when the path feels isolating.

Every person affected by desmoid tumors deserves to feel seen, supported, and connected.

As we enter , we hope to shine a deeper light on the full experience of living with a desmoid tumor and the importance of supporting the whole person along the way.

08/26/2026

A desmoid tumor diagnosis can affect so much more than your medical care.

The first year may bring unfamiliar language, difficult decisions, uncertainty, and emotions that can shift from one day to the next. It can change how you see your body, your future, and yourself.

As we enter , we’re highlighting the full impact of a desmoid diagnosis and the importance of seeing the whole person behind it. We believe every person affected by desmoid tumors deserves to feel seen, supported, and connected.

If you were diagnosed within the past year, join us for our next Gathering Tree session on Thursday, September 10 at 3 pm ET. This gentle, supportive space is for people navigating the early chapter of life with a desmoid tumor.

Connect with others who understand. Share what’s on your mind, ask questions, listen, or simply be in a space where you don’t have to explain why this is hard.

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

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

08/24/2026

Many people naturally use bilateral movement to regulate stress without realizing it. Walking is one of the simplest examples.

Today's "Calm in the Chaos" practice is bilateral stimulation through the Butterfly Hug.

This gentle practice uses rhythmic left-right movement to help the brain and body process stress in a way that feels calming, organized, and less overwhelming.

To try it:
- Cross your arms over your chest, with each hand resting on the opposite shoulder or upper arm.
- Begin gently tapping one side and then the other.
- Continue at a pace that feels comfortable to you.
- As you tap, notice the rhythm and any sensations in your body.

You can also pair the movement with a slow breath or a simple phrase, such as:
“I am here.”
“I can take this one moment at a time.”

The goal isn't to push away difficult thoughts or feelings. It's simply to offer your nervous system a steady, supportive rhythm when things feel like too much.

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. If you'd like to explore more gentle, evidence-informed ways to support yourself through stress or medical uncertainty, you can find it in the Mental Health Resources section of our website.

08/21/2026

Here's a great way to kick off ! Build at The Desmoid Tumor Research Foundation- DTRF's patient and caregiver community event on September 1st.

💜 Desmoid Tumor Awareness Month (DTAM) should begin with the people at the heart of it: patients and caregivers. Join the DTRF as we launch the month together through connection, understanding, and shared purpose.

🤝 Take part in small-group conversations, including breakout rooms organized by tumor location and a dedicated caregiver group. Meet others who understand, share experiences, and strengthen the connections that make this community so powerful.

📅 Join us on September 1st at 7-8 PM ET. This virtual event is exclusively for desmoid tumor patients and caregivers.

🔗 Register today: https://bit.ly/DTAM-Kickoff-2026

✨️ Thank you to our DTAM Kickoff Event sponsor, SpringWorks Therapeutics, for their continuous support of the desmoid tumor community.