The Desmoid Tumor Research Foundation

Registration Is Open For The 2022 Virtual DTRF “Together We Will” Weekend!

Initiatives

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Registration is *NOW OPEN* at DTRF.org/weekend for the 2022 DTRF Together We Will Virtual Weekend (Sept. 23-25), kicking off our summer-long RFA Virtual Challenge virtual fundraiser!

As a reminder, the primary events of our signature September weekend will be held *virtually* once again. However, we also hope to host a special, outdoor, in-person community event at Fairmount Park in Philadelphia on the morning of Sunday, September 25th.

Plan to join your community this fall, and TOGETHER WE WILL…

  • CONNECT patients and care partners from across the globe at our International Virtual Community Networking Event.
  • EMPOWER OURSELVES with information from top physicians and researchers studying and treating desmoid tumors at the signature DTRF Annual Patient Meeting Webinars.
  • FUND A CURE all summer long with the #RFAVirtualChallenge community fundraiser! Go the #Distance4Desmoids and we’ll celebrate with a LIVE virtual ceremony to close the Weekend. Learn more.
  • ADVANCE RESEARCH by hosting some of the brightest researchers and medical professionals from across the globe at the DTRF International Desmoid Tumor Research Workshop. (*Researchers and medical professionals ONLY*)

Stay informed by adding us to your Favorites on Facebook and signing up to receive our emails.

Learn more about the Weekend events.

(#DTRFWeekend2022)

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As many patients know first-hand, “Response Evaluation Criteria in Solid Tumors” (known as RECIST) – a standard methodology of measuring a patient’s tumor response to treatment – is not always the best method to measure treatment outcomes for desmoid patients.

RECIST criteria are used in clinical trials to assess if a tumor is progressing, stable, or responding to treatment. RECIST is strictly measurement-based and does not factor in other positive indicators that do not involve changes in tumor size. Additionally, RECIST relies on certain measurements to monitor response – such as “longest dimension” – which may not accurately reflect the typical response of desmoid tumors to treatments.

To address this issue, the DTRF and members of its Advisory Boards have formed a working group with top radiologists, as well as pharmaceutical medical professionals who design clinical trials for desmoid patients. This working group will potentially help define other imaging features beyond RECIST that can be used to better evaluate patient outcomes.

The first working group meeting held earlier this week was a resounding success. We would like to thank our working group chairs, Drs. Mrinal Gounder and Larry Schwartz, for hosting this meeting which will impact the future of radiology in desmoid tumors.

This is an ongoing project and we will keep the community updated as it develops.


Learn more about the Radiomics Working Group

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We are excited to announce that two, stable, long-term desmoid tumor cell lines will be available for researchers to access soon.

With the support of the DTRF, Mushriq Al-Jazrawe, PhD, a postdoctoral fellow at Boehm Lab, has successfully created two stable cell lines that replicate the features of desmoid tumors. The stable cell lines can survive for long periods of time in the lab, making it easier to study desmoid tumors and perform large-scale experiments. One of these cell lines harbors a T41A mutation in the CTNNB1 gene, while the other has an S45F mutation. The cell lines will be available soon through American Type Culture Collection (ATCC).

ATCC is a private, nonprofit, global biological resource center and standards organization that provides scientists with the biomaterials and resources they need to conduct critical life science research. ATCC is one of the world’s largest suppliers of cell lines to labs around the world.

This project is only possible with our community’s support. If you would like to help champion desmoid tumor research initiatives like these, please consider making a donation.


Learn more about Desmoid Tumor Cell Lines

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This summer, the DTRF submitted a proposal to the CDC for a new ICD-10 code specific to the diagnosis of desmoid tumor, including subcategories for tumor location. We believe a specific desmoid tumor code will improve research as well as patient care.

After review by the CDC, the proposal was set to be presented to the CDC’s ICD-10 committee on September 14th.

At the meeting, Dr. Breelyn Wilky, a DTRF Scientific Advisory Board member, gave a 10-minute presentation about desmoid tumors, followed by the outline of the proposed code, and then answered questions. The entire meeting is available to view on the CDC website: Day 1, with Dr. Wilky’s presentation starting at time code 5:53:22.

No decisions are made at this meeting. We want to thank Dr. Wilky for her time and commitment to this effort!


For the latest information, please visit our page on the ICD-10 Code effort.

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Today is the final day of Desmoid Tumor Awareness Month 2021!

Over the last month, we have shared stories from #DesmoidSurvivors representing six countries and four continents whose ages spanned three to 78 years old. Thank you to all of the patients who bravely submitted their stories, and to all who shared them. You have helped raise #DesmoidAwareness!

If you are living with this disease, please know you are not alone in this fight. We encourage all patients to explore our Patient & Caregiver Resources.

In case you missed them, recordings of our special Desmoid Tumor Awareness Month LIVE stream events are available:

  • “What’s in a Name? ‘Cancer’ and Desmoid Tumors” with Raphael Pollock, MD, PhD, director of The James, The Ohio State University  |  WATCH
  • “One Desmoid Tumor Patient’s Journey” with Christina Kosyla  |  WATCH

You can help raise #DesmoidAwareness year-round by talking about your desmoid tumor journey to family and friends, as well as your physicians, and raising funds for desmoid tumor research around special occasions like birthdays, diagnosis anniversaries, holidays, and more. Start a Facebook fundraiser with one click or learn about other Fundraising options.

Stay up to date with the latest in desmoid tumor-related news from the DTRF by favoriting us on Facebook, following us on Twitter (@dtrfoundation) and Instagram (@dtrfoundation), and by signing up for our emails.

Thank you for making a difference this September!

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Thank you to our global desmoid tumor community of patients, care partners, and medical professionals, who attended and participated in the DTRF Together We Will Virtual Weekend! (#DTRFWeekend2021)

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

**Thanks to the hard work of our RFA Challengers, and the generosity of other donors and sponsors, we’ve SURPASSED our fundraising goal of $200,000!** Please note that your fundraising pages will stay open for a few months, so we encourage you to keep going! Or, start a Facebook fundraiser with one click. 

  • 2021 DTRF International Desmoid Tumor Research Workshop:  170 dedicated physicians and researchers from ~100 institutions in 30 countries registered for our virtual 8th Annual DTRF International Desmoid Tumor Research Workshop! We’re honored to be able to host this important collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities.

If you couldn’t join us last weekend, here’s how you can access the recorded events:

  • 2021 DTRF Annual Patient Meeting Webinars 1 & 2: The recordings of these educational events (including live Q&A) are available to view on our Patient Meeting page.
  •  2021 DTRF RFA Virtual Challenge Ceremony: This uplifting celebration is available to view on Facebook.

The work continues to find better treatments and, one day, a cure! Once again, on behalf of the DTRF team, THANK YOU!