The Desmoid Project

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The Desmoid Project

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01/19/2026

On this MLK Day, we reflect on how justice shows up in healthcare through access, dignity, and belonging.

For many patients, especially those from historically marginalized groups, experiences of racism and discrimination within healthcare and beyond directly affect quality of care, trust in medical systems, and overall health outcomes.

For rare disease patients, equity means being seen, believed, and supported—not sidelined by systems that weren’t built with them in mind.

We honor Dr. King’s legacy by continuing to advocate for care rooted in dignity, belonging, and justice for all.

01/16/2026

Telehealth access is not guaranteed — and for many in the desmoid community, it’s essential.

For people living with desmoid tumors, telehealth isn’t a convenience. It’s often the only way to:
• Connect with sarcoma and desmoid specialists
• Receive follow-up care without exhausting travel
• Access behavioral health support from home

Because desmoid tumors are rare, many patients live far from specialized care. When telehealth access is uncertain, so is continuity of care.

Right now, Medicare telehealth flexibilities that expanded access during the pandemic are temporary, not permanent. Congress has extended them again, most recently through January 30, 2026, but without further action, these protections could disappear.

Lawmakers are currently considering the Telehealth Modernization Act, which would extend many of these protections through 2027 and bring much-needed stability for patients and providers alike.

This is where patient voices matter.
If telehealth has helped you or a loved one — or could help — we encourage you to contact your representatives and urge them to support continued Medicare telehealth access.

Advocacy doesn’t always look big. Sometimes it’s a message sent from home, asking for care that meets you where you are.

01/12/2026

Motherhood with a desmoid diagnosis can feel heavy in ways that are hard to name—and even harder to share.

On Thursday, January 15, we’re holding a Gathering Tree session just for Moms With Desmoids. 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.

There’s no fixing here. No minimizing. Just space to be real, listen, and feel supported by people who truly get it.

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

01/09/2026

Living with desmoid tumors often means carrying a lot that other people never see. There’s pressure to keep going, to be “fine,” and to manage the day even when you’re exhausted or overwhelmed. But true strength isn’t in pushing through—it’s in allowing ourselves to acknowledge what we’re feeling.

Sometimes it’s speaking up for yourself at a doctor's appointment. Sometimes it’s letting someone know you’re not okay. And sometimes, courage is simply choosing to get out of bed and keep going, even when it feels hard.

At The Desmoid Project, we understand that life with a chronic condition affects far more than the body. It touches your emotions, your mental health, and your sense of self. You are not weak for needing support, and you are not alone in this.

It’s okay to feel. It’s okay to rest. And it’s always okay to try again tomorrow.

01/05/2026

The Gathering Tree is a place to pause, breathe, and feel less alone. 🌳

Every other Thursday in 2026, we'll hold free, standalone virtual support sessions for the desmoid tumor community. Each session centers on a specific shared experience, because feeling understood matters.

Upcoming Gathering Tree sessions include:
• Moms With Desmoids
• Caregivers
• Newly Diagnosed (within 1 year)
• Intra-Abdominal Desmoids
• Extra-Abdominal Desmoids
• Men With Desmoids
• FAP Patients

These sessions are confidential, led by certified professionals who are also desmoid patients, and designed to offer connection without pressure. You’re welcome to join one session or several. Whatever feels supportive right now.

You don’t have to carry this alone.
Find upcoming sessions and sign up here: bit.ly/TDPprograms

12/29/2025

As the year winds down, you don’t have to carry every hard moment with you into the next one.

If this year included pain, uncertainty, or survival mode, it’s okay to set some of it down—at least for today. Healing doesn’t require a clean slate or a new version of you. It starts with rest, honesty, and gentle care.

Let this be a pause, not a push.

Strength can look like stillness, especially when it’s shared.

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.

Address

Port Angeles, WA
98362

Website

http://www.thedesmoidproject.org/

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