The Desmoid Tumor Research Foundation

Stand with the Desmoid Tumor Community this September

Events

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September is Desmoid Tumor Awareness Month (DTAM). A month to raise awareness, share your desmoid tumor story, and remind every patient and caregiver that they are part of a community that stands with them.

This year, that spirit of desmoid community has a new symbol. The Desmoid Tumor Research Foundation (DTRF) is proud to introduce our new DTAM logo, designed by Rachael Craddick, a mom and caregvier to daughter, Nora, who was diagnosed with a desmoid tumor in 2024.

Rachael’s design is inspired by her family’s experience and the strength she has found within the desmoid tumor community. Her logo design was the runner-up in DTRF’s first-ever DTAM logo contest last year. Scroll down to learn more about this special design.

The Story Behind the Logo

Nora was diagnosed with a desmoid tumor in August 2024, shortly after her 4th birthday. After Rachael noticed a small bump on the side of her daughter’s head, further evaluation and imaging revealed a large mass beneath the surface.

Located deep in the left side of Nora’s skull, her desmoid tumor involves the muscles used for chewing and significantly limits how far she can open her mouth. Today, after 18 months of medication therapy, her desmoid tumor has stopped growing, but she continues to have routine scans and active surveillance by her medical team. While this is welcomed news for Nora’s family, the effects of this rare disease still remain.

“I want people to know that ‘stable’ doesn’t always mean life goes back to normal. We’re incredibly grateful that Nora’s tumor has stopped growing, but she still can’t fully open her mouth because of where it’s located.” – Rachael

Rachael’s experience also underscores why greater awareness matters. Before Nora’s diagnosis, her family had never heard of desmoid tumors, an experience familiar to many in our rare disease community. Desmoid tumors do not spread to other parts of the body, but they can be locally aggressive, cause pain, loss of function, and lead to many difficult treatment decisions.

For Rachael and her family, finding a community that understood made a meaningful difference.

“If there’s one thing I’ve learned, it’s that rare diseases can feel incredibly isolating until you find your community. The support we’ve found through DTRF has reminded us that we’re not alone. I wanted to be part of the DTAM logo contest because it’s a cause that is very personal to my family and a chance to give back to a community that means so much.” – Rachael

Stronger Together

That sense of community inspired Rachael’s design for this year’s DTAM logo.

The logo’s abstract unity shape represents the connection among patients, caregivers, and supporters. Its gentle, flowing lines symbolize hope and strength, while the teal colors connect the design to the DTRF and desmoid tumor awareness. The logo also reflects the complexity of this diagnosis and the profound impact desmoid tumors can have on patients and families.

“To me, the logo is a reminder that none of us are alone—we’re stronger together. Awareness leads to research, research leads to better treatments, and better treatments give families like ours hope for the future.” – Rachael

That message is at the heart of Desmoid Tumor Awareness Month (DTAM). The DTRF is honored to feature Rachael’s meaningful design in a variety ways in our DTAM campaign this year. Thank you, Rachael and Nora, for sharing your story and helping bring greater awareness and connection to the desmoid tumor community this September.

Make Your Mark This DTAM

DTAM is all about taking action! Here are five ways you can take part and help raise awareness this month:

  1. Follow us on Facebook, Instagram, LinkedIn & X to share our DTAM social media content and format a Twibbonize frame to your profile picture.
  2. Visit our DTAM webpage for more resources, past event recordings, and much more!
  3. Register today! You don’t want to miss our DTAM Kickoff Event on Tuesday, Sept. 1st at 7-8PM ET.
  4. Start your fundraiser and join a community of Accelerators that are funding life-changing desmoid tumor research.
  5. Give what you can, when you can by making a donation to support our mission.

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Desmoid tumor research is moving forward, but we have an opportunity to move it faster.

We’re excited to introduce our brand new Accelerate Research Campaign, a community fundraising movement designed to speed the pace of discovery and drive progress toward better treatments, improved outcomes, and ultimately, a cure for desmoid tumors.

For more than 20 years, the DTRF has helped build momentum in desmoid tumor research by annually funding innovative research and fostering scientific collaboration around the world.

Through this campaign, we are leveling up our future impact and we invite YOU to be a part of it.

Accelerators are the driving force behind this campaign.

When you start a fundraiser, you become an Accelerator: someone who takes action when progress cannot wait.

By sharing your story and rallying your community, you help raise awareness, inspire giving, and accelerate the research that desmoid tumor patients are counting on.

You do not need to be a fundraising expert to make an impact. Our team is here to help you along the way.

Connect with us for support and explore our Fundraising Hub. 

Start your fundraiser. Share your story. Accelerate research.

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Our 2026 Together We Will Weekend on Sept. 25-27th is a place for patients and caregivers to feel seen, supported, and connected with a community that understands the desmoid tumor journey.

To help reduce financial barriers to attending, the DTRF created our first-ever Travel Access Program, which provides financial assistance for transportation and lodging for eligible participants to attend our annual event.

Key Dates & Details:

  • Application due date: July 30, 2026
  • Travel awards distributed: August 15–30, 2026
  • Assistance may cover: Transportation and lodging only
  • Please note: Conference registration is not included, and participants will still need to register for the event
  • Applications: Accepted on a rolling basis

You belong at the Together We Will Weekend. This program was created to help more patients and caregivers access the education, support, and connection that makes this Weekend so meaningful.

Apply Today

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Join us for the 2026 DTRF Together We Will Weekend, taking place September 25-27th in Philadelphia, PA at the Sheraton Philadelphia University City Hotel. This year’s gathering will bring together patients, caregivers, clinicians, researchers, and industry professionals for a dynamic and meaningful Weekend centered on connection, learning, and progress.

Whether you are newly diagnosed, have been navigating your desmoid journey for years, are supporting a loved one, or working in the field as a clinician or researcher, YOU are welcome here.

Explore the Weekend’s full schedule. Online registration is now closed (9/21).

Get event updates and much more directly in your inbox by subscribing to our DTRF Newsletter.

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We’re excited to invite the desmoid tumor community to our 2026 Together We Will Weekend, taking place September 25-26th in Philadelphia, PA at the Sheraton Philadelphia University City Hotel. This year’s gathering will bring together patients, caregivers, clinicians, and researchers for a dynamic and meaningful weekend centered on connection, learning, and progress.

The weekend will kick off on Friday, September 25th, with our 13th International Desmoid Tumor Research Workshop, where clinicians and investigators will share the latest scientific developments and collaborate on advancing desmoid tumor research. This will be followed by our Annual Patient Meeting, creating a unique opportunity for the broader community to engage directly with experts and one another.

Attendees can expect presentations on emerging research and new treatment options, along with opportunities to ask questions, exchange perspectives, and build lasting connections.

This year, we’re also introducing new types of presentations and experiences designed to broaden the conversation, bringing fresh perspectives on the patient experience, well-being, and the many dimensions of living with desmoid tumors. In addition, we’re creating more intentional and interactive ways for patients and caregivers to connect, learn from one another, and gain practical insights.

Whether you are newly diagnosed or have been part of this community for years, this weekend is designed to inform, support, and inspire. We hope you’ll join us in Philadelphia for what promises to be an engaging and impactful experience.

More details and registration information will be shared at the beginning of May.

In the meantime, we encourage you to join our DTRF Newsletter to receive all the 2026 Together We Will Weekend registration information and event reminders in your inbox.

Thank you to our Presenting Sponsor, SpringWorks Therapeutics and our Silver Sponsor, Immunome, Inc. for supporting this annual event.

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Thank you to our global desmoid tumor community of patients, caregivers, researchers, and medical professionals who traveled to Chicago and participated in the DTRF Together We Will Weekend. It was wonderful to connect with everyone in person in a brand new city! We are grateful to our Presenting Event Sponsor, SpringWorks Therapeutics, for making the Weekend possible.

Together we advanced research, connected with each other, empowered ourselves, and fundraised for a cure, while celebrating our community and Desmoid Tumor Awareness Month!

  • September 12, 2025 – DTRF International Desmoid Tumor Research Workshop: Dedicated clinicians and researchers from around the world attended the Int’l Desmoid Tumor Research Workshop, presenting the latest desmoid tumor science and research advances. We’re honored to host this essential collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities. Recordings of the Workshop’s presentations (including live Q&A) are now available. Check out this year’s photo gallery as well.
  • September 13, 2025 – DTRF Annual Patient Meeting: At the heart of our annual Weekend, patients, caregivers, clinicians, and researchers gathered to connect, collaborate and learn. Recordings of the educational presentations (including live Q&A) are available on our Patient Meeting Presentations page. Check out this year’s photo gallery.

The work continues to find better treatments and, one day, a cure for each and every desmoid tumor patient. Once again, on behalf of the DTRF team, THANK YOU!