The Desmoid Tumor Research Foundation

Top 5 Reasons To Attend The Annual DTRF Together We Will Weekend

Education

by

The annual DTRF Together We Will Weekend is September 22-24! We hope you’re already making plans to be there with us in Philadelphia, but just in case you need a little convincing, here are the top 5 reasons to attend!

1. To connect.

Patients often say that the moment they first met another desmoid tumor patient in person is the moment they stopped feeling alone.

When you attend the annual DTRF Together We Will Weekend, you will meet other desmoid tumor patients (perhaps for the very first time), connect more deeply with those you already know, and/or be the veteran patient that shares your experience and wisdom with someone newly diagnosed. Whatever your circumstances, these personal connections are invaluable and can make this journey a little easier.

This is the largest annual gathering of desmoid tumor patients in the world. Be a part of this foundational weekend!

2. To be part of something bigger.

Every attendee arrives with one significant thing in common: first-hand, personal experience with desmoid tumors. So, even if you come by yourself and you’re not an extrovert, it’s easy to connect with others quickly and naturally build your community of support.

Stickers colored to represent the location of your tumors are available to add to your name tag, making it simple to find others with a similar experience. The DTRF Together We Will Weekend is a warm and welcoming space for all affected by this rare disease and the perfect place to get to know your community!

This year, fostering collaboration between our patients/caregivers and our desmoid tumor experts is a top priority, because we all have the same goal of working together to improve outcomes and eventually find a cure for desmoid tumors. It will take every facet of our community to reach that goal, so let’s connect, collaborate and learn from each other!

3. To empower yourself.

Being your own best advocate means staying abreast of the latest advancements in desmoid tumor research and treatments.

The experts attending the DTRF Together We Will Weekend present on new research, promising medical therapies, upcoming clinical trials, and brand new therapeutic options, often months, sometimes years, before they become widely known in the field. Desmoid tumor research is advancing every single year and therefore no annual event is alike.

Gain the knowledge you need to ask the right questions, become aware of cutting-edge research to share with your physicians back home, and make informed future treatment decisions.

4. To learn and share.

Our distinguished speakers are leaders in the field of desmoid tumors and their presentations aim to deliver the most updated information on research, potential treatments and ways to help our community find answers.

Cryoablation, HIFU, Nexavar, nirogacestat (SpringWorks Therapeutics’ gamma-secretase inhibitor), and AL102 (Ayala Pharmaceuticals’ gamma-secretase inhibitor) were all presented at DTRF Patient Meetings months, in some cases years, before becoming widely known in the field.

One of the best ways a patient can ensure proper treatment is by staying up to date on the research and advancements in the field. Patients often feel more confident making difficult treatment decisions when they can also consider what is on the horizon.

During DTRF Together We Will Weekend, the learning flows both ways. The weekend is structured as an ongoing conversation between experts and patients, an information exchange that benefits our entire community. This is your chance to ask some of the top physicians and researchers your questions in person and share your unique desmoid tumor experience.

5. To celebrate our community, raise awareness and have fun at the RFA 5K Run & Walk!

Now that we are meeting in person again (finally), our annual weekend will culminate with the RFA 5K Run & Walk. Don’t let the name fool you, we welcome ALL types of participation. Our accessible course in beautiful Fairmount Park, Philadelphia provides the perfect backdrop for a day of fun and celebration. Even some of our medical and industry partners are bringing teams this year! Yes, the kids’ Fun Run will be back too! Click here to register for RFA.

Can I still fundraise?

Absolutely! Just like the “virtual” years after Covid, you have the option to create a personal fundraiser to encourage giving. Click here to register for RFA, share your challenge with your friends and family, and join our RFA Champions Chat on Facebook to connect with other Champions who are fundraising virtually. The RFA awards ceremony on 9/24 will be live streamed from Philadelphia–virtual fundraisers are included!

by

*Update: For recordings and up-to-date CME accredited course information, visit our Get CME Credits page.*

We are pleased to share that PeerView Institute in partnership with the DTRF will provide a unique MasterClass & Practicum educational symposium on desmoid tumors for members of the medical community to increase knowledge of desmoid tumors and treatment among medical professionals.

On November 17th, during the Connective Tissue Oncology Society (CTOS) Annual Meeting, the symposium entitled “On the Cusp of Change: Modernizing the Treatment of Desmoid Tumors with Novel Gamma Secretase Inhibitors” will be presented by Bernd Kasper, MD, PhD (University of Heidelberg), Mrinal Gounder, MD (Memorial Sloan Kettering Cancer Center), and Alessandro Gronchi, MD (Fondazione IRCCS Istituto Nazionale dei Tumori). The faculty will provide expert insights and practical guidance for navigating the latest treatment advances, including gamma-secretase inhibitors (GSIs), for desmoid tumors. Illustrative cases and clinical scenarios will be discussed to demonstrate the emerging role and integration of novel GSIs in real-world patient care settings.

The completion of this symposium will award participants Continuing Medical Education (CME) credits. CMEs are authorized by the American Medical Association Physician’s Recognition Award and are often required to maintain medical licenses and credentials to see patients, providing a strong incentive for physicians to maintain or increase their knowledge and skills over time. 

Physicians can register at https://bit.ly/DesmoidTumors2022T. 

We look forward to this educational event, and thank CTOS, PeerView, and our community for making this important project possible.

by

Today is the final day of Desmoid Tumor Awareness Month 2022!

Over the last month, we have shared stories from #DesmoidSurvivors around the globe at different stages in their journeys with different perspectives on managing life with these rare tumors. Thank you to all of the patients who submitted their stories, and to all who shared them across social media. You have helped raise #DesmoidAwareness!

To mark the end of this year’s campaign, please enjoy this musical montage of the many faces of our community. If you are living with this disease, please know you are not alone in this fight. We encourage you to explore our Patient & Caregiver Resources.

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

  •  “One Desmoid Tumor Patient’s Journey” with Jackie Kucskar  |  WATCH
  • “5 Mental Health Tools for Desmoid Patients” with Licensed Clinical Social Worker and Desmoid Patient Ashley Williams  |  WATCH
  • “Getting the Most Out of your Consultation and Treatment Plan” with Dr. Candace Haddox from Dana-Farber Cancer Institute  |  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!

by

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)

by

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

by

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.