The Desmoid Project

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The Desmoid Project

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12/22/2025

For anyone navigating the holidays with chronic illness ❤

• Pay attention to your energy, not the expectations
Le your body set the pace—not the calendar.

• Do what’s manageable, not what’s “normal”
Traditions can shift. Showing up looks different in different seasons.

• Give yourself permission to take breaks—without explaining
Rest is allowed. Full stop.

• Let people help you and show up for you
If someone offers, say yes. Being supported is not a weakness.

• Indulge yourself in something that fills your cup
Quiet, comfort, joy—these count as care.

• You get to choose how to respond when others don’t understand
Educate gently, or disengage completely. Both are valid.

• Look for glimmers of hope, not pressure for gratitude
One small moment of peace is enough.

• You’re not ruining the holidays
You’re navigating them—and that’s more than enough.

We’ll be a little quieter here at these next few weeks, holding space for rest and care.

12/18/2025

Our January patient support group is officially FULL.

To those who signed up — thank you. It takes real courage to seek support, show up for yourself, and step into community. We’re honored to walk alongside you and grateful to create a space to build strength together.

If you were hoping to join but missed a spot, complete our interest form to be the first to hear about our next one: bit.ly/TDPsupportgroupinterest

In 2026, we’ll continue expanding ways to learn and connect, including Gathering Tree sessions, support groups, and an in-person patient retreat.

Thank you for being part of this community. Your voice matters here.

12/15/2025

Our brains are built to adapt, even after trauma.

Our neural pathways are similar to hiking trails: the more often we walk a path, the clearer and more automatic it becomes.

When we experience something overwhelming, like a desmoid tumor diagnosis, the brain often carves fast, well-worn flood paths toward survival modes: fight, flight, freeze, fawn, or collapse. These aren’t failures. They’re the brain doing its best to protect us.

Healing doesn’t mean forcing ourselves to “just be calm.” It means gently creating a new trail grounded in safety, connection, and regulation. At first, this path can feel unfamiliar or hard to access. But with practice, support, and compassion, it grows stronger. And slowly, the old survival pathways soften.

Change is possible. Regulation can become our new default. One small step at a time.

12/11/2025

Just like redwood trees, we grow stronger when our lives are intertwined with people who understand what we’re carrying.

If you’ve been feeling the weight of your desmoid diagnosis, or you’re craving a space where you can show up exactly as you are, we invite you to join our January virtual patient support group.

Together, we explore the mental and emotional impact of this diagnosis, reduce isolation, learn practical tools for managing stress, and discover new ways to grow, even in the hardest seasons.

You don’t have to navigate this alone. Your place in the community is already here.
January support group registration is open now at bit.ly/TDPsupportgroup

By connecting with The Desmoid Project, your voice also becomes part of something larger, helping us build strength through connection across the systems that shape desmoid care.

12/08/2025

Redwood trees thrive by connecting with each other.
Humans do, too.

Our next virtual support group begins in January. You're welcome here.
Sign up: bit.ly/TDPsupportgroup

12/04/2025

We’re honored to share that The Desmoid Project has received a grant from SpringWorks Therapeutics to expand and validate our Community Needs Assessment—a project built to better understand and support the real experiences of desmoid patients and caregivers.

This work will help us amplify patient voices, guide better care, and strengthen the foundation for future advocacy and support. More information to come in 2026!

We’re so grateful to our partners at SpringWorks Therapeutics for helping us continue this vital work. Together, we’re building strength through connection.

12/01/2025

Navigating life with a desmoid tumor can place a heavy strain on the mind and body. Many in our community find themselves moving through a repeating stress loop, often without even noticing it’s happening. This visual breaks down the common stages of that cycle:

1️⃣ Shock – That sudden jolt when new information, symptoms, or changes catch you off guard.
2️⃣ Uncertainty & Anxiety – The mental spiral of “what ifs” that can make even ordinary days feel overwhelming.
3️⃣ Nervous System Dysregulation – Feeling on edge, worn out, or unable to settle into rest, even when you’re trying your best.
4️⃣ Physical Symptoms – Stress doesn’t stay in our heads; it often intensifies pain or creates new physical challenges.
5️⃣ Emotional Strain – The weight of it all can lead to frustration, sadness, or a sense of disconnect from the people we love.
6️⃣ Reactivation of Stress – One appointment, new symptom, or unexpected moment can send the cycle spinning again.

💛 Finding a Way Out
Recognizing these patterns is the first step toward interrupting them. Gentle practices like grounding techniques, breathwork, therapy, and connecting with supportive communities (like ours) can help bring the nervous system back into balance.

You don’t have to navigate the stress cycle alone. Our next patient support group series begins in January, offering a space to talk through these challenges and feel supported by others who understand.

11/27/2025

Happy Thanksgiving! Today, we’re grateful for the strength, honesty, and resilience of the desmoid community.

Living with a rare tumor can bring uncertainty, but gratitude can help ground us even on the hardest days.

We’re so thankful for this community that shows up for one another with compassion, courage, and connection. As we prepare for our next patient support group in January, we’re reminded that healing feels more possible when we don’t have to carry everything alone. If you or someone you know needs a supportive community to lean on, we’d be honored to welcome you.

If you feel called to share, we’d love to hear one thing you’re grateful for today!

11/25/2025

New research alert:

At The Desmoid Project, we know how complex treatment decisions and side effects can be. That’s why our support groups exist. They’re a place to process, learn, and connect with others who truly understand. (Our next patient support group begins in January!)

A recently published study on long-term Nirogacestat treatment offers new insights into desmoid tumor care: ascopubs.org/doi/10.1200/JCO-25-00582

We’ll keep sharing research that helps our community feel informed, supported, and empowered.

11/20/2025

Find Strength Through Connection:
January Support Group Registration Is Now Open!

Living with a desmoid tumor can feel overwhelming and isolating. Our upcoming support group series offers a safe, supportive space to share experiences, learn coping tools, and connect with others who understand.

January 19 – March 9
Mondays, 5:30–7 pm ET
Virtual, free, and trauma-informed

Led by certified professionals who are also desmoid patients, this 8-week program helps you feel seen, supported, and empowered.

Sign up today: bit.ly/TDPsupportgroup

11/17/2025

Living with a desmoid tumor often feels like a constant cycle of fight, flight, and freeze. Our nervous system naturally wants to protect us, but when the challenge is inside us—a tumor we can’t escape—freeze can feel like the inevitable outcome.

🔹 Flee: We may try to distance ourselves from the pain or emotional strain, but there's no escaping something within.
🔹 Fight: We battle through surgeries, treatments, and constant uncertainty, but the tumor remains.
🔹Freeze: And then, when we’ve fought or fled as much as we can, we find ourselves stuck—paralyzed by what we can’t change or control.

For those of us in the desmoid community, it’s a reminder that freezing isn’t failure—it’s how our body and mind try to cope with the inescapable. But even in those moments, there’s still strength in how we move forward, how we lean on each other, and how we continue to navigate this journey, together.

How do you handle the moments when “freeze” feels like the only option? Let’s support one another as we face the realities of life with desmoid tumors and remind ourselves that even in stillness, we are resilient.

11/14/2025

There’s a quiet kind of healing that happens when someone simply shows up and stays.

No advice. No solutions. Just presence.

For many living with a desmoid tumor—or any chronic condition—being seen and cared for without expectations can be the most powerful comfort of all.

If you needed the reminder today: your feelings matter, your story matters, and you don’t have to carry it alone.

Address

Port Angeles, WA
98362

Website

http://www.thedesmoidproject.org/

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