http://www.thedesmoidproject.org/

The Desmoid Project, Port Angeles, WA (2026)

02/20/2026

Today, we honor caregivers.

Caring for someone living with a desmoid tumor often means holding many roles at once — advocate, researcher, appointment coordinator, emotional anchor, steady presence in moments of uncertainty.

It can mean carrying fear quietly. Managing logistics behind the scenes. Staying strong while navigating your own exhaustion, grief, and hope.

In our community needs assessment, 90% of caregivers shared that their loved one faced mental health challenges after diagnosis, and many caregivers experience their own emotional strain alongside them. Caregivers are deeply impacted by this journey, too.

That’s why we’re intentional about creating space for you.

Last week, we held a Caregivers Gathering Tree session — a dedicated space to pause, exhale, and connect with others who understand the weight and complexity of this role. A space where caregivers didn’t have to be the strong one for a moment.

Your care matters.
Your wellbeing matters.
And you deserve support, too.

Today, and every day, we see you.

02/20/2026

Being newly diagnosed with a desmoid tumor
can feel overwhelming —
full of questions, uncertainty, and information
that’s hard to process all at once.

The first year often brings shifting emotions, treatment decisions, unfamiliar language, and moments of fear no one can prepare you for.

We’re hosting a Gathering Tree session for those diagnosed within the past year — a supportive space to connect with others navigating this same early season. The session will be led by a certified professional who is also decades into their own desmoid journey, combining trauma-informed facilitation with lived experience.

This is a place where you don’t have to have it all figured out.
No pressure to be positive. No expectation to be strong.
Just space to ask questions, share honestly, and feel less alone.

If you’re navigating this new chapter, we’d be honored to hold space with you.
Learn more and sign up here: bit.ly/TDPprograms

02/16/2026

We’re proud to share an update about our amazing Clinical Director, Ashley Williams.

Ashley recently completed her Certified Clinical Trauma Professional – Level II (CCTP-II) credential, an advanced certification focused on complex, chronic, and developmental trauma. This training deepens her expertise in understanding how trauma lives in the body and nervous system over time, especially when layered with ongoing medical stress, uncertainty, and loss of control.

For the desmoid community, this matters. Living with a desmoid tumor can involve medical trauma, chronic stress, anticipatory grief, and nervous system dysregulation. This advanced training strengthens her ability to provide neuroscience-based, trauma-informed care that honors both the physical and emotional realities of chronic illness.

She is also pursuing a clinically focused doctorate centered on trauma in individuals living with chronic and rare medical conditions, including desmoid tumors. This degree is intentionally practice-focused, expanding her skills to better support patients navigating pain, identity shifts, and long-term uncertainty.

We’re grateful for Ashley's dedication to continual learning and to bringing that knowledge directly back to this community.

02/12/2026

Advocacy win! Medicare telehealth access has been extended.

Legislation signed on February 3, 2026 restores and extends expanded Medicare telehealth benefits through December 31, 2027. This means many flexibilities — like receiving care from home and broader provider access — will continue.

For people living with a desmoid tumor, telehealth can reduce travel burdens, support continuity of care, and make appointments more accessible during times of pain, fatigue, or limited mobility.

This extension brings much-needed stability for patients, caregivers, and providers, and it shows what’s possible when patient voices are heard. We’ll keep advocating for care that meets people where they are.

02/09/2026

Caring for 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.

We’re hosting a Gathering Tree session just for caregivers — a gentle, 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 fixing. No minimizing. Just space to speak honestly, 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

02/04/2026

Today can bring up a lot for people in the desmoid tumor community, and we want to name that with care.

Desmoid tumors have lived in an in-between space for a long time. Historically labeled benign, they are now classified by the World Health Organization (WHO) as an intermediate sarcoma. Many desmoid patients are treated at cancer centers, by oncology teams, with cancer-directed therapies. For some, the experience feels very clearly like cancer. For others, that language doesn’t feel right. Both experiences are valid.

What matters most today isn’t the label, but the reality of living with a rare, complex disease that can profoundly impact bodies, minds, families, and futures.

offers a moment to pause and reflect on the importance of awareness, education, access to care, and patient-centered research—and to recognize the resilience it takes to navigate any serious diagnosis, especially one so often misunderstood.

At , we believe in meeting people where they are, honoring the full spectrum of experiences, and creating space for connection without pressure or expectation. Whether you identify with the word cancer or not, you are part of this community—and your story matters.

02/03/2026

Feeling overwhelmed or disconnected?
Try this gentle grounding reset.

When stress or anxiety takes over, our nervous system can slip into survival mode. Grounding is a simple, sensory-based tool that helps bring the body and mind back to the present moment, signaling safety again.

One common grounding practice is the 5-4-3-2-1 method:
- 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

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.

We’re sharing tools like this as part of our mission to support those living with a desmoid tumor — because healing isn’t just medical, it’s mental and emotional too.

01/29/2026

Living with a desmoid tumor often means carrying uncertainty day after day. Treatments may or may not work. Pain and limitations may linger. Plans get postponed, rewritten, or abandoned altogether. It’s tiring in ways that are hard to explain.

There are moments when the lack of control feels heavy, when grief surfaces for the life you expected or the body you once trusted. But there are other moments when you begin to notice where choice still exists: in how you care for your mental health, who you let walk alongside you, and how gently you meet yourself on hard days.

Change doesn’t usually arrive all at once. More often, it shows up in small, meaningful ways — asking for support, adjusting expectations, resting without guilt, or allowing both resilience and vulnerability to coexist.

If you’re navigating a season like this, know that adapting doesn’t mean giving up. It means honoring what you’ve been through and recognizing that strength can take many forms.

01/26/2026

We’re excited to share something new — and something deeply familiar.

You may notice a new line alongside our logo: Strength Through Connection. This is a reflection of what has always been at the heart of The Desmoid Project.

Our logo was inspired by Giant Redwood trees that thrive despite shallow root systems by intertwining their roots for shared strength.

Living with a desmoid tumor can feel isolating — rare, misunderstood, and hard to explain. But when patients and caregivers find one another, share their stories, and are met with understanding, something shifts. Connection becomes resilience. Community becomes strength.

This tagline reflects our mission clearly and intentionally: We provide strength through connection within our community and across the systems that shape desmoid care.

And because it matters to say out loud:
The Desmoid Project was founded for patients, by patients, and that remains foundational to who we are. Our tagline is evolving not because that has changed, but because Strength Through Connection best captures the purpose of the work we do and the way this community continues to hold one another up.

Thank you for being part of this community. You are the reason this work exists, and the reason it continues to grow.

01/23/2026

Living with an extra-abdominal desmoid can affect how you move through the world—sometimes quite literally—and can carry layers of pain, uncertainty, and loss that are hard to put into words.

On Thursday, January 29, we’re holding a Gathering Tree session for people with extra-abdominal desmoid tumors. This is a gentle, supportive space to connect with others who understand the realities of chronic pain, mobility challenges, medical uncertainty, and the emotional toll of a body that doesn’t always cooperate.

There’s no pressure to explain. No comparisons. Just room to show up as you are, listen, and be supported by people who truly understand.

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

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.

The Desmoid Project

02/20/2026

02/20/2026

02/16/2026

02/12/2026

02/09/2026

02/04/2026

02/03/2026

01/29/2026

01/26/2026

01/23/2026

01/19/2026

01/16/2026

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