The Desmoid Project

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The Desmoid Project

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05/28/2026

The overwhelm that can come with a new desmoid tumor diagnosis is hard to put into words.

There can be a lot to carry in the first year — medical language that feels unfamiliar, decisions that feel heavy, ongoing uncertainty, and emotions that shift from one day to the next.

On June 4 at 6 pm ET, we’re holding a Gathering Tree session for people diagnosed within the past year. This is a gentle, supportive space to connect with others who understand the challenges of this early chapter.

The session is facilitated by a certified professional who is also living her own long-term desmoid journey, bringing both trauma-informed support and lived experience into the space.

No pressure to explain everything. No expectation to have the “right” attitude. Just space to talk openly, listen, ask questions, and feel less alone.

If this resonates, we’d be honored to hold space with you.

Learn more and sign up here: bit.ly/TDPprograms

05/26/2026

Our new website is officially live!

You can now:
• Easily browse upcoming Gathering Tree sessions and support groups
• Access resources for patients, caregivers, and professionals
• Learn more about trauma-informed care and mental health support within the desmoid community

As part of , we’re especially proud to share a growing collection of downloadable mental health resources created specifically for people living with a desmoid tumor, caregivers, and professionals.

You can explore the website now at thedesmoidproject.org

05/21/2026

“Hope can be as simple as knowing you don’t have to face this alone.”

In a rare disease community, connection often becomes a source of hope. Being seen, understood, and supported can shift even the hardest days.

This , we’re holding onto the kind of hope that grows in community.

If you’ve been looking for a place to feel more connected, understood, or supported, you are welcome here.

05/18/2026

Supporting someone living with a desmoid tumor can bring a lot to carry — emotionally, mentally, and physically.

Caregivers are often navigating uncertainty, decision fatigue, worry, advocacy, and the ongoing balancing act of caring for someone they love while trying to care for themselves, too.

On Thursday, May 21, we’re holding a Gathering Tree session for caregivers. This is a supportive space to connect with others who understand these experiences firsthand.

No pressure to explain. No expectations to hold it all together. Just space to share honestly, listen openly, and feel supported in community.

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

05/14/2026

Connection doesn’t only happen in big moments.
It’s built over time, in small, meaningful ways.

Our e-newsletter is one way we stay connected—sharing resources, upcoming programs, and ways to feel supported.

We invite you to sign up at thedesmoidproject.org.
Because strength grows through connection.

05/12/2026

There’s an important difference between positivity and toxic positivity.

When someone is facing a serious diagnosis like a desmoid tumor, words matter.

Positivity acknowledges that something is difficult while still offering hope, support, or encouragement. Toxic positivity pushes painful emotions aside or suggests that someone should focus only on the positive.

Supportive positivity sounds like:
“This is hard. How can I support you?"
“You don’t have to be strong all the time. It’s okay to have hard days.”

Minimizing toxic positivity sounds like:
“Just stay positive, and you’ll heal!”
“Everything happens for a reason.”

At The Desmoid Project, we believe people deserve space for both hope and hard emotions. Real support does not mean pretending things are okay.

05/07/2026

May is Mental Health Awareness Month—a reminder that mental health is health.

The emotional impact of a desmoid tumor diagnosis can be profound and often invisible. The uncertainty, isolation, nervous system overload, identity shifts, and constant adapting can affect every part of a person’s life.

And yet, these experiences are often minimized or unsupported.

At The Desmoid Project, we believe emotional well-being deserves care, attention, and community. We believe healing can begin in spaces where people feel seen and understood.

You do not have to carry all of this alone. Find strength through connection.

05/05/2026

Life with a desmoid tumor often means navigating more than just medical treatment—it can involve caring for your whole self, including your physical, emotional, and nervous system wellbeing.

On Thursday, May 14, at 5 pm ET, we’re holding a Gathering Tree session focused on integrative health for individuals living with desmoid tumors. This is a supportive space to explore how complementary approaches can fit alongside your care, and to connect with others who are thinking about healing more holistically.

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.

There’s no pressure to have answers. No expectations. Just space to reflect, share, and learn in community.

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

04/30/2026

Living with a desmoid tumor diagnosis doesn’t always fit neatly into the idea of “adjustment.”

There can be ongoing scans.
Ongoing decisions.
Ongoing uncertainty.

When something continues, it makes sense that your body and mind continue to respond.

If it still feels hard, if your nervous system still feels on alert, if it doesn’t feel resolved—that makes sense.

Because it isn’t over.

This , we’re holding space for the complexity of living with something that continues. And even here, within the ongoing, you are still finding ways to keep going. That, too, is resilience.

04/28/2026

Living with an extra-abdominal desmoid can shape how you move through daily life—sometimes in visible ways, and sometimes in ways others can’t see. It can carry layers of pain, uncertainty, and loss that are difficult to put into words.

On Thursday, May 7, we’re offering a Gathering Tree session for those with extra-abdominal desmoid tumors. This is a supportive space to connect with others who understand the realities of chronic pain, mobility challenges, medical uncertainty, and the emotional weight of a body that doesn’t always cooperate.

There’s no need to explain or compare. Just space to come as you are, to listen, and to be alongside others who truly understand.

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

Address

Port Angeles, WA
98362

Website

http://www.thedesmoidproject.org/

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