The Desmoid Project

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.

08/20/2026

A different path can still be a meaningful one.

This , we're celebrating the possibility of finding purpose, joy, and hope along the way, even when life looks different than we imagined.

08/19/2026

Supporting someone living with a desmoid tumor often means holding a lot that goes unseen — worry, responsibility, love, fatigue, and resilience all at the same time.

On Thursday, August 20 at 6 pm ET, we’re holding a Gathering Tree session for caregivers. This is a supportive space to connect with others who understand the unique emotional weight of supporting someone through uncertainty, treatment decisions, and ongoing care.

This is a place where you don’t have to be strong or have answers. 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.

Register for this session: thedesmoidproject.org/?p=5062
Learn more: thedesmoidproject.org/the-gathering-tree

08/17/2026

Trees are stronger when their roots are connected.
So are we.

Our next virtual support group begins in September.
You're welcome here.
Sign up at thedesmoidproject.org/support-group

08/13/2026

Strength isn't measured by how much you can carry or how long you can keep going without rest. This , we hope you'll remember that your worth has never depended on your ability to endure.

You are worthy on the hard days, the hopeful days, and every day in between.

08/12/2026

We're excited to announce that our Fall 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 truly understand.

September 23 – November 18
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
Learn more and register at thedesmoidproject.org/support-groups

08/10/2026

When we're living with uncertainty, it's natural for our thoughts to race ahead.

"What if the scan shows something different?"
"What if this symptom means something?"

Today's "Calm in the Chaos" practice is Grounding Through the Senses.

Grounding isn't about making anxiety disappear. It's about gently helping your mind and body reconnect with what's happening right now instead of getting pulled into future fears or spiraling thoughts.

One simple way to practice is the 5-4-3-2-1 exercise:
- Name 5 things you can see
- Notice 4 things you can feel
- Tune into 3 things you can hear
- Identify 2 things you can smell
- Notice 1 thing you can taste

You don't have to do it perfectly. You don't even have to finish it.

This practice isn’t about pushing feelings away. It’s about creating a sense of safety and stability while you experience them, reminding your body that, in this moment, you are okay.

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.