The Desmoid Project

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The Desmoid Project

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11/10/2025

A desmoid tumor diagnosis can feel isolating—but you're not alone.

At The Gathering Tree, our trauma-informed, virtual support sessions offer a safe, understanding space to share, listen, and find strength through connection.

Upcoming Thursday Sessions (ET):
• Nov 13, 6–7:30 pm – Extra-Abdominal
• Nov 20, 3–4:30 pm – Men
• Dec 4, 5:30–7 pm – FAP
• Dec 11, 12–1:30 pm – Moms
• Dec 18, 4–5:30 pm – Newly Diagnosed (

11/09/2025

We know it’s been a little quiet around here lately, but that’s about to change in the best way!

We’re thrilled to welcome our new Communications Director, Alice Bassett, who is also a fellow desmoid patient. Alice will help us engage our community, amplify our message, and drive our mission forward—reaching more patients, caregivers, and partners who share our vision of strength through connection.

Learn more about Alice and the rest of The Desmoid Project team on our website: thedesmoidproject.org/about-us

11/06/2025

What an incredible experience at the Patient 360 Symposium hosted by EMD Serono in Boston.

Our Executive Director, Dana Lawson, and her trusted Canine Companions service dog, Franz, were honored to represent The Desmoid Project alongside patient advocacy leaders from across the globe. Together, we explored how patient perspectives and lived experiences can shape the future of medicine—redefining how we measure treatment efficacy and impact.

We’re deeply grateful for the opportunity to bring the voices of desmoid tumor patients to this collaborative think tank and to advocate for better access to mental health and telehealth resources. A special thank you to SpringWorks Therapeutics for inviting us to participate and for their continued partnership in amplifying patient voices.

Collaboration is where real change begins, and community is where strength takes root.

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.

Address

Port Angeles, WA
98362

Website

http://www.thedesmoidproject.org/

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