The Desmoid Project

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The Desmoid Project

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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

04/23/2026

We’re honored to share that The Desmoid Project is now an official member of the Sarcoma Patient Advocacy Global Network - SPAGN, a global network of patient advocacy organizations working to improve care and outcomes for people affected by sarcomas and rare cancers.

This step reflects something we deeply believe—connection matters. Not just within our own community, but across organizations working to support people navigating rare diseases.

We’re grateful to be part of a growing network committed to shared learning, collaboration, and amplifying patient voices.

sarcoma-patients.org/usa-the-desmoid-project

04/20/2026

You deserve to heal.

Healing isn’t something you have to earn.
It doesn’t take away from anyone else.
It doesn’t mean you’re forgetting what you’ve been through.

Living with a desmoid tumor can bring so many layers—grief, uncertainty, fear, and change. And sometimes, when moments of light or relief begin to return, they can come with unexpected feelings too.

You’re allowed to feel joy again.
It’s okay to move forward, in your own time and in your own way.

Moving forward doesn’t erase what’s been hard. It can exist alongside it. And choosing healing can also be a way of carrying forward hope, for yourself and for others.

This , we’re holding space for healing without pressure, and for whatever that looks like for you.

If you’re looking for opportunities for healing, our June 15-18 Patient Retreat lottery is open through this Wednesday, April 22. Learn more and sign up here: bit.ly/TDPretreat

04/16/2026

Living with a desmoid tumor often means learning to navigate the unknown. And still, hope can exist here.

Not as pressure to feel positive, but as a quiet, steady belief that your story is still unfolding.

This , we’re holding space for hope in all its forms—especially the kind that exists right alongside uncertainty.

Address

Port Angeles, WA
98362

Website

http://www.thedesmoidproject.org/

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