The Desmoid Project

Home
United States
Port Angeles, WA
The Desmoid Project

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from The Desmoid Project, Medical and health, Port Angeles, WA.

09/18/2025

Hey everyone, Dana here! Some of you might know me as a longtime Desmoid patient and co-founder of The Desmoid Project. I’ve been living with Desmoid tumors for over 26 years—diagnosed before the internet existed—so I truly understand how hard it can be to find a community that really gets it.

As an above-the-knee amputee due to this diagnosis, I’ve faced my share of challenges and I see so many of you sharing the same struggles. That’s why we created these spaces at The Desmoid Project—to offer a place where you’re understood and supported.

We’ve got our upcoming Patient Support Group series, where you can gather with others to share your story, build community, and learn mental health tools to navigate this journey. We’re also hosting The Gathering Tree, a more casual, drop-in space each week for patients and caregivers to connect for 90 minutes without any long-term commitment. It’s just a great place to come together and feel less alone.

At the heart of all of this is a simple truth: healing is rooted in connection. This community is rooted in resilience, connection, and shared understanding—and we’d love for you to be part of it.

✨ You’ll find all the details in the flyers attached to this post— register for the support group here https://bit.ly/TDPsupportgroup and The Gathering Tree here - https://bit.ly/TDPgatheringtree. ✨

08/27/2025

Sometimes the most powerful step is simply showing up — being in a space where others truly understand.

Our final virtual support group of the year is coming up soon. These groups are designed to decrease isolation, build community, and offer practical tools for navigating the challenges of living with a desmoid tumor. Each session is small by design, capped at 12 participants, so there’s time for everyone to feel seen and heard.

As one past participant shared, “This experience changed my life.”

Registration is first come, first served: https://bit.ly/TDPsupportgroup

Together we can hold space, share tools, and remind one another: you are not alone. 🫶

08/21/2025

At The Desmoid Project, we believe in the power of community. Healing and surviving with desmoid tumors is not a journey meant to be walked in isolation — which is why we created The Gathering Tree.

Every Thursday, we come together for a 90-minute virtual meet-up designed for patients to connect, be heard, and remind one another that we don’t have to carry this alone.

✨ Today’s session is for extra-abdominal patients at 6:00 pm ET.
We’d love for you to join us.

Register here: https://form.jotform.com/251816182886063

Because being together matters. 🌱

08/07/2025

We created our new program, The Gathering Tree, with that truth at its core.

For many of us living with desmoid tumors — or caring for someone who is — the world can feel isolating. We get used to hiding our pain, minimizing our needs, and holding space for others while we quietly unravel.

The Gathering Tree offers a different kind of space — one where you can come exactly as you are. No expectations. No pressure. Just a small, gentle place to root, rest, and rise in the presence of others who truly understand.

Whether you need to speak, listen, cry, or simply be — you are welcome here.

Join us Thursdays for this free, virtual support space.
Schedule and registration: https://bit.ly/tdpgatheringtree

08/01/2025

🌿 Introducing The Gathering Tree 🌿

You asked for more ways to connect — and we heard you. We’re so proud to launch The Gathering Tree, our new weekly program created to offer space, support, and shared understanding for the desmoid tumor community.

The name was born from the image of a place where people can come as they are — to root, rest, and rise. Just like gathering beneath a tree offers shelter and belonging, this program offers a welcoming place to land, be seen, and find community among those who truly get it.

Each week features a rotating theme — from newly diagnosed groups to caregiver sessions and more — so you can sign up for the gatherings that speak to your journey. You’re welcome to register for as many sessions as serve you.

These virtual sessions are small by design — capped at 10 participants — so everyone has room to speak and be supported. Once you sign up, you’ll receive a HIPAA-compliant Zoom link prior to the session. Here's the link for the program schedule and registration - https://bit.ly/tdpgatheringtree.

We invite you to join when the time feels right for you. 🫶

07/25/2025

At The Desmoid Project, we know this quote rings true for so many living with desmoid tumors.

This path can feel invisible to the outside world—navigating doctors who don’t understand, the ache of uncertainty, the toll it takes on your body, your bank account, your relationships… and your spirit.

Grief is part of this journey. Not just once, but over and over. Grieving the life you had, the plans that shifted, the energy you lost just trying to survive the day. That grief is real. And so is your strength.

You don’t have to carry it all alone.

We’re here. Whether you’re newly diagnosed or decades in, in treatment or in limbo, feeling strong or falling apart—we hold space for all of it, and all of you.

You are seen. You are valid. You are part of a community that gets it. 🫶

07/21/2025

Feeling overwhelmed? Try this simple reset.
�When stress builds, our bodies need a way to signal safety again — and this breathing technique can help.

The physiological sigh is a science-backed tool to quickly calm your nervous system.

Just follow these steps:
1️⃣ Take a long nasal inhale�2️⃣ Add a short nasal inhale on top�3️⃣ Release a long exhale through the mouth with a sigh

Repeat 1–3 times. That’s it.

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

07/14/2025

It’s easy to get caught in the anxiety spiral — especially when you’re living with uncertainty, chronic pain, and the constant question marks that come with a desmoid diagnosis.

Our brains are wired to protect us, but sometimes that means looping thoughts, fear of what’s next, and worst-case scenarios on repeat. That spiral? It can feel never-ending.

But here’s something powerful: one of the best ways to interrupt that anxiety spiral is to activate the other side of your brain — the creative side.
Painting. Writing. Rearranging a room. Doodling. Singing off-key. Journaling. Playing with color. Moving your body to music. Whatever creativity looks like for you — it pulls you into the present and offers your nervous system a much-needed exhale.

Let’s start choosing the creativity spiral instead. One small, curious, creative moment at a time. 💙

07/11/2025

Living with a desmoid tumor can be isolating. It’s a diagnosis most people have never heard of. The decisions are complex. The pain is often invisible. And explaining it all? Exhausting.

But your journey doesn’t need to be understood to be valid.
It’s real. It’s hard. And it’s yours.

To every desmoid patient walking this path:
You don’t owe anyone an explanation.
You owe yourself care, compassion, and community.

🫶 Follow to stay connected.

07/07/2025

A body scan is a mindfulness practice where you gently bring your attention to different parts of your body, noticing sensations without trying to change anything. It’s about tuning in, not fixing — observing tension, pain, calm, or even numbness with compassion and curiosity.

Body scans can reduce stress, ease anxiety, and help you reconnect with yourself, especially when you’re living with chronic illness or trauma. It’s a simple, powerful way to listen to your body and honor what it’s been through.

Start at your toes, move slowly upward, breathe deeply, and notice. You don’t have to do it perfectly — you just have to show up. 💙

07/04/2025

Living with a desmoid tumor often means battling something most people have never heard of. No roadmap. No easy answers. Just persistence through pain, scans, uncertainty — and the emotional weight that comes with it.

To every desmoid patient quietly enduring the hardest days: Your strength is not invisible to us. We see you. We’re with you. And we’re building a community where your story matters.

🫶

06/26/2025

In the desmoid tumor community, we often meet each other in life’s most vulnerable chapters. And yet, it’s in those quiet moments of shared understanding—when someone sees your pain and simply stays—that true connection is born. This quote from Henri Nouwen reminds us that healing isn’t always about fixing—it’s about presence, compassion, and being held through it.

Tag someone who’s impacted your journey in a positive light more ways than one.🫶♥

Address

Port Angeles, WA
98362

Website

http://www.thedesmoidproject.org/

Alerts

Be the first to know and let us send you an email when The Desmoid Project posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to The Desmoid Project:

Shortcuts

Want your practice to be the top-listed Clinic in Port Angeles?