The Desmoid Project

Home
United States
Port Angeles, WA
The Desmoid Project

Directions Website Contact the organization

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

The Desmoid Project provides trauma-informed mental health support, community connection, advocacy, and resources for people affected by desmoid tumors, building strength through connection within our community and across systems that shape desmoid care.

10/01/2026

On this , we're reflecting on an incredible Together We Will Weekend with The Desmoid Tumor Research Foundation- DTRF.

We’re deeply grateful to the for inviting The Desmoid Project to present a mental health session this year. We were honored to be part of the weekend and connect with so many people committed to the desmoid community.

We’re also grateful for the connections made throughout the weekend—the conversations shared, questions asked, experiences exchanged, and relationships strengthened.

To every patient and caregiver who showed up and shared their lived experience, every clinician who continues to listen and learn alongside our community, every researcher working to deepen our understanding of desmoid tumors, and our industry partners advancing clinical research and supporting work that strengthens our community: thank you.

Bringing these perspectives together matters. When patients, clinicians, researchers, and industry partners learn from one another and connect around a shared purpose, there's no limit to what we can accomplish.

This weekend was a beautiful reminder of what we mean when we say:
Strength Through Connection.

09/30/2026

Movement can feel different after a desmoid tumor diagnosis. What once felt simple may now require new considerations, adjustments, or expectations.

Pain, fatigue, treatment effects, physical limitations, and uncertainty about what your body can tolerate can make physical activity feel complicated. At the same time, movement can also be a way to reconnect with your body, support your wellbeing, and build confidence in what is possible.

On Thursday, October 15 at 12 pm ET (4 pm GMT), we're holding a Gathering Tree session focused on Physical Activity and Fitness — part of our ongoing Integrative Health series created in response to community interest. This is a supportive space to explore the role of movement in daily life and connect with others navigating similar questions and challenges.

This session will be led by a certified professional and co-facilitated by Jessie Clark, a desmoid patient and integrative and functional medicine coach (.align), offering both lived experience and grounded support.

Visit our website or scan the QR code to register.
Learn more: thedesmoidproject.org/the-gathering-tree

09/28/2026

A new way to connect, share, and support one another is coming to The Desmoid Project!

We’re excited to announce our new Peer-to-Peer Mentorship Program, created in partnership with Imerman Angels.

Through one-on-one mentorship, people living with a desmoid tumor and caregivers will have the opportunity to connect with someone who understands the experience from the inside.

Right now, we’re recruiting mentors to help us build the foundation for this new program.

If you’re living with a desmoid tumor or are a caregiver with your own lived experience, and you’d like to support someone else in our community, we invite you to become a mentor.

Mentees will be able to register once we have recruited enough mentors to support the program. We’ll share more information as the program develops.

During Desmoid Tumor Awareness Month, we’ve been talking about what it means to be seen, supported, and connected. This new program is one more way we can create meaningful connections and use our lived experience to support someone else.

Learn more and sign up to become a mentor:
thedesmoidproject.org/mentorship

09/24/2026

As Desmoid Tumor Awareness Month comes to a close, The Desmoid Tumor Research Foundation- DTRF "Together We Will" weekend begins—a weekend bringing together people living with desmoid tumors, caregivers, and professionals to learn, share, and connect.

Strength comes in many forms. Sometimes, it looks like vulnerability. Sometimes, it means finding your voice or discovering opportunities for growth. And sometimes, strength comes through connection with a community that reminds us we are not alone.

“The desmoid tumor journey can be so isolating, but it's a huge relief to find a community of people who can relate to your struggles and provide support.”

— Support Group Participant

Throughout this month, our Voices of Strength series has shared the many ways strength can show up when you’re living with a desmoid tumor. As we close out Desmoid Tumor Awareness Month and begin "Together We Will" weekend, we’re celebrating the connections that help us find strength along the way.

This is Strength Through Connection.

09/23/2026

The experience of living with an intra-abdominal or other type of internal desmoid tumor is often invisible to others, even when it affects so much of daily life.

Unpredictable complications, complex medical decisions, and the uncertainty of what’s happening inside your body can carry a weight that others don’t always see.

During Desmoid Tumor Awareness Month, we’re reminded that being seen means recognizing the whole-person impact of a desmoid tumor.

On Thursday, October 8 at 6 pm ET (10 pm GMT), we’re holding a Gathering Tree session for people with intra-abdominal or other types of internal desmoid tumors. This is a gentle, supportive space to connect with others who understand the realities of navigating high-risk tumor locations and the emotional toll of living with a condition that often feels both serious and invisible.

No pressure to explain everything. No minimizing. No comparisons. Just space to share, listen, and connect.

The session is facilitated by a certified professional who is also a desmoid patient, bringing both trauma-informed support and lived experience.

Visit our website or scan the QR code to register.
Learn more: thedesmoidproject.org/the-gathering-tree

09/21/2026

When stress or uncertainty feels overwhelming, making a sound can be a simple way to reconnect with your body.

Today's "Calm in the Chaos" practice is Making a Sound.

Sometimes, grounding can begin with something as simple as the sound of your own voice.

Humming, singing, playing an instrument, chanting, or even repeating a comforting phrase can create a gentle rhythm and vibration that brings your attention back to the present moment.

You might try:
* Humming softly to yourself.
* Singing along to a favorite song.
* Playing a musical instrument.
* Repeating a comforting phrase or mantra.
* Chanting or using another rhythmic sound that feels meaningful to you.
* Saying a familiar prayer or words of reassurance out loud.
* Simply noticing the vibration of your voice as you make a sound.

You don't have to sing or play well. You don't have to sound a certain way. The goal isn't to sound perfect or to push difficult thoughts or feelings away. It's simply to give your body something steady to connect with while you move through them.

This practice comes from our free resource, "Calm in the Chaos: Tools to Regulate Your Nervous System," created by our Clinical Director, Ashley Williams, LCSW. If you'd like to explore more gentle, evidence-informed ways to support yourself through medical uncertainty, you can find it in the Mental Health Resources section of our website.

09/17/2026

What does strength look like when you’re living with a desmoid tumor? Sometimes, strength is allowing yourself to be vulnerable and recognizing that your experience deserves to be heard.

For this week's Voices of Strength, we’re sharing the words of a support group participant who took the step toward connection, opened up about their experience, and discovered greater confidence in their own voice.

“I was nervous about the support group, but knew I needed a space to connect with others with shared experiences. This was the first time I’ve allowed myself to be vulnerable and share my story with others. I gained confidence in telling my story and recognized the tendency to minimize my experiences and emotions.”

Strength doesn’t always mean feeling confident or having the right words. Sometimes, it means giving yourself permission to be vulnerable, to tell your story, and to recognize that what you’ve experienced matters.

This is Strength Through Connection.

09/15/2026

Three years. An incredible community. We are so grateful.

On September 15, The Desmoid Project celebrates our third birthday!

We began with a simple belief: no one should have to navigate a desmoid tumor alone.

In just three years, more than 300 patients and caregivers worldwide have connected with The Desmoid Project through support groups, patient retreats, advocacy services, and mental health programs. But our greatest impact is found in the connections made and the people who feel less alone.

None of this would be possible without the patients, caregivers, volunteers, facilitators, partners, and supporters who have believed in this mission and helped us grow.

Thank you for being part of our first three years. We’re so grateful for the community we’ve built together, and we’re excited for what’s ahead.

Thank you for three years of Strength Through Connection.
SpringWorks Therapeutics, EMD Serono, Parabilis Medicines, Immunome

09/14/2026

Introducing a new place to connect, learn, and feel less alone.

The Desmoid Project is proud to partner with The Desmoid Tumor Research Foundation- DTRF and Smart Patients to launch a new online community for people living with desmoid tumors and their caregivers.

This free, worldwide community offers a trusted, moderated, and trauma-informed space to:
• Connect with people who understand
• Ask questions and share experiences
• Learn from others navigating desmoid tumors
• Explore treatment experiences and research
• Build confidence as an informed advocate for your own care

The community is open now.
Join us and find connection with others who understand.
→ smartpatients.com/site/partners/desmoid-community

Launching during Desmoid Tumor Awareness Month, we’re celebrating one of the things that makes our community stronger: connection.

Strength Through Connection:

09/10/2026

What does strength look like when you’re living with a desmoid tumor? Sometimes, strength is allowing yourself to be seen, heard, and supported.

Finding people who understand your experience can create space to acknowledge what you’ve been carrying while discovering new ways to move forward.

For this week's Voices of Strength, we’re sharing the words of a retreat participant who found strength in being understood by others who could relate to their experience and in finding new tools for the journey ahead.

“I no longer feel isolated in dealing with this disease. For the very first time, I felt seen and heard by people who understood the grief and trauma I've endured. I left with new resiliency tools to select from as I forge my journey.”

Strength doesn’t always look like pushing through. Sometimes, strength is letting yourself be supported, finding connection, and carrying new tools with you as you continue your journey.

This is Strength Through Connection.

We're sharing Voices of Strength throughout Desmoid Tumor Awareness Month: to recognize the many different ways strength can show up in the lives of people living with a desmoid tumor.

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 Organization

Send a message to The Desmoid Project:

Want your organization to be the top-listed non profit organization in Port Angeles?