The Desmoid Project

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We’re grateful to see conversations about desmoid patient care continuing to grow in thoughtful, multidisciplinary ways....
03/16/2026

We’re grateful to see conversations about desmoid patient care continuing to grow in thoughtful, multidisciplinary ways.

On Tuesday, March 24 (6–7 PM ET), The Desmoid Tumor Research Foundation- DTRF is hosting an educational webinar exploring how desmoid tumor diagnosis and classification shape treatment decisions and patient wellbeing.

We’re especially honored that Ashley Williams, LCSW, CCTP-II, Clinical Director and Co-Founder of The Desmoid Project, will be part of the expert panel, bringing a perspective on the mental health and lived experience impacts that often accompany a desmoid diagnosis.

Moments like these remind us that Strength Through Connection extends beyond patients — it also happens when clinicians, researchers, advocates, and patient leaders come together to better understand the full experience of living with a desmoid tumor.

If this conversation would be meaningful for you, we encourage you to register and submit your questions for the panel: bit.ly/2026-SpreadtheWord-Webinar

For many people living with a desmoid tumor, the emotional weight of diagnosis can feel isolating. But when people come ...
03/12/2026

For many people living with a desmoid tumor, the emotional weight of diagnosis can feel isolating. But when people come together in spaces where they are understood, something begins to shift.

Stories are shared. Strength is rediscovered. Hope grows.

That’s the heart behind our Patient Support Groups — creating spaces where individuals living with a desmoid tumor can process, connect, and build resilience together.

Registration is now open for our next group beginning April 15.
Learn more and register: bit.ly/TDPSupportGroup

We're excited to announce that our April Support Group registration is now open!Living with a desmoid tumor can feel ove...
03/09/2026

We're excited to announce that our April Support Group registration is now open!

Living with a desmoid tumor can feel overwhelming and isolating. Our upcoming support group series offers a supportive space to share experiences, learn coping tools, and connect with others who understand.

April 15 – June 3
Wednesdays, 11 am – 12:30 pm ET
Virtual, no cost, and trauma-informed

Led by certified professionals who are also desmoid patients, this 8-week program helps you feel seen, supported, and empowered.

Find Strength Through Connection:
Sign up today: bit.ly/TDPsupportgroup

Living with an intra-abdominal desmoid tumor can mean carrying a lot that others can’t see—unpredictable complications, ...
03/06/2026

Living with an intra-abdominal desmoid tumor can mean carrying a lot that others can’t see—unpredictable complications, complex medical decisions, and the quiet weight of uncertainty about what’s happening deep inside your body.

On Thursday, March 12, we’re holding a Gathering Tree session for people with intra-abdominal 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.

There’s no pressure to explain. No comparisons. Just room to show up as you are, listen, and be supported by people who truly understand.

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

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

Nature helps regulate our nervous system through all five senses:• Sight: Soft patterns and natural light help the mind ...
03/02/2026

Nature helps regulate our nervous system through all five senses:
• Sight: Soft patterns and natural light help the mind rest and refocus
• Smell: Natural scents like trees or fresh air lift mood and ease tension
• Sound: Water, wind, and birdsong signal safety and calm
• Touch: Feeling sand, bark, grass, or water brings awareness back to the body
• Taste: Whole, natural foods reconnect us with simple sensory experiences

You don’t have to hike a mountain or spend hours outdoors. Even small moments with nature can make a difference — a plant on your desk, sunlight through a window, or a short walk outside.

Reflection for today:
What sensory experiences in nature — sound, smell, touch, or light — help you feel more grounded or at ease?

Are there small ways you can bring elements of nature into your daily environment, even if you can’t physically go outside?

Today on Rare Disease Day, we honor the strength of those living with a desmoid tumor, along with the millions of indivi...
02/28/2026

Today on Rare Disease Day, we honor the strength of those living with a desmoid tumor, along with the millions of individuals and families navigating rare diseases around the world.

Living with a rare condition can feel isolating. Fewer answers. Fewer specialists. Uncertainty that others may not fully understand.

At The Desmoid Project, we believe in strength through connection.
When people feel seen, heard, and supported, resilience grows.
When voices come together, systems begin to change.

We invite you to show your stripes — by sharing your story, supporting someone in the rare disease community, or learning more about the realities of rare conditions.

Visit the National Organization for Rare Disorders, Inc. (NORD)
for information on Rare Disease Day efforts and how to get involved.

We’d love for you to tag in your posts!

For many living with a desmoid tumor,questions about IVF, fertility, and pregnancycan feel layered and deeply personal.T...
02/23/2026

For many living with a desmoid tumor,
questions about IVF, fertility, and pregnancy
can feel layered and deeply personal.

Treatment decisions may come with fertility concerns.
Family planning can feel uncertain.
Conversations about the future may carry both hope and fear at the same time.

We’re hosting a special Gathering Tree session focused on IVF & Fertility — a supportive space to explore these questions alongside others who understand the unique considerations of navigating desmoid tumors and reproductive health.

This session will be co-facilitated by a certified trauma-informed professional along with guest co-facilitator Amy Beitz, a desmoid patient with lived experience navigating desmoids and family planning. Together, they will help create a space that is grounded, informed, and compassionate.

As always, this is a space for open conversation —
no pressure, no assumptions, no one-size-fits-all answers.
Just thoughtful dialogue, shared experience, and support.

If this is part of your story, we would be honored to hold space with you.
Learn more and sign up here: bit.ly/TDPprograms

Read this summary of a Q&A with Dr. Dale Shepard for more insight into this topic: research.smartpatients.com/resources/the-long-wait-life-fertility-and-uncertainty-in-desmoid-tumor-care


Today, we honor caregivers.Caring for someone living with a desmoid tumor often means holding many roles at once — advoc...
02/20/2026

Today, we honor caregivers.

Caring for someone living with a desmoid tumor often means holding many roles at once — advocate, researcher, appointment coordinator, emotional anchor, steady presence in moments of uncertainty.

It can mean carrying fear quietly. Managing logistics behind the scenes. Staying strong while navigating your own exhaustion, grief, and hope.

In our community needs assessment, 90% of caregivers shared that their loved one faced mental health challenges after diagnosis, and many caregivers experience their own emotional strain alongside them. Caregivers are deeply impacted by this journey, too.

That’s why we’re intentional about creating space for you.

Last week, we held a Caregivers Gathering Tree session — a dedicated space to pause, exhale, and connect with others who understand the weight and complexity of this role. A space where caregivers didn’t have to be the strong one for a moment.

Your care matters.
Your wellbeing matters.
And you deserve support, too.

Today, and every day, we see you.


Being newly diagnosed with a desmoid tumorcan feel overwhelming —full of questions, uncertainty, and informationthat’s h...
02/20/2026

Being newly diagnosed with a desmoid tumor
can feel overwhelming —
full of questions, uncertainty, and information
that’s hard to process all at once.

The first year often brings shifting emotions, treatment decisions, unfamiliar language, and moments of fear no one can prepare you for.

We’re hosting a Gathering Tree session for those diagnosed within the past year — a supportive space to connect with others navigating this same early season. The session will be led by a certified professional who is also decades into their own desmoid journey, combining trauma-informed facilitation with lived experience.

This is a place where you don’t have to have it all figured out.
No pressure to be positive. No expectation to be strong.
Just space to ask questions, share honestly, and feel less alone.

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

We’re proud to share an update about our amazing Clinical Director, Ashley Williams.Ashley recently completed her Certif...
02/16/2026

We’re proud to share an update about our amazing Clinical Director, Ashley Williams.

Ashley recently completed her Certified Clinical Trauma Professional – Level II (CCTP-II) credential, an advanced certification focused on complex, chronic, and developmental trauma. This training deepens her expertise in understanding how trauma lives in the body and nervous system over time, especially when layered with ongoing medical stress, uncertainty, and loss of control.

For the desmoid community, this matters. Living with a desmoid tumor can involve medical trauma, chronic stress, anticipatory grief, and nervous system dysregulation. This advanced training strengthens her ability to provide neuroscience-based, trauma-informed care that honors both the physical and emotional realities of chronic illness.

She is also pursuing a clinically focused doctorate centered on trauma in individuals living with chronic and rare medical conditions, including desmoid tumors. This degree is intentionally practice-focused, expanding her skills to better support patients navigating pain, identity shifts, and long-term uncertainty.

We’re grateful for Ashley's dedication to continual learning and to bringing that knowledge directly back to this community.

Advocacy win! Medicare telehealth access has been extended.Legislation signed on February 3, 2026 restores and extends e...
02/12/2026

Advocacy win! Medicare telehealth access has been extended.

Legislation signed on February 3, 2026 restores and extends expanded Medicare telehealth benefits through December 31, 2027. This means many flexibilities — like receiving care from home and broader provider access — will continue.

For people living with a desmoid tumor, telehealth can reduce travel burdens, support continuity of care, and make appointments more accessible during times of pain, fatigue, or limited mobility.

This extension brings much-needed stability for patients, caregivers, and providers, and it shows what’s possible when patient voices are heard. We’ll keep advocating for care that meets people where they are.

Caring for someone living with a desmoid tumoroften means holding a lot that goes unseen —worry, responsibility, love, f...
02/09/2026

Caring for someone living with a desmoid tumor
often means holding a lot that goes unseen —
worry, responsibility, love, fatigue, and resilience
all at the same time.

We’re hosting a Gathering Tree session just for caregivers — a gentle, supportive space to connect with others who understand the unique emotional weight of supporting someone through uncertainty, treatment decisions, and ongoing care.

This is a place where you don’t have to be strong or have answers.
No fixing. No minimizing. Just space to speak honestly, listen, and feel supported by people who truly get it.

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

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Port Angeles, WA
98362

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