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The Desmoid Tumor Research Foundation

DTRF Hosts the 2024 “Together We Will” Weekend in Houston

Research Workshop

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Thank you to our global desmoid tumor community of patients, caregivers, researchers, and medical professionals who traveled to Houston 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 platinum 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 20, 2024 – 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. Learn more about the annual DTRF International Desmoid Tumor Research Workshop.
  • September 21, 2024 – DTRF Patient Meeting: At the heart of our annual Weekend, patients, caregivers, clinicians, and researchers gathered to connect, collaborate and learn. Presentations on research, treatments, and a special presentation on the patient experience. Recordings of these educational events (including live Q&A) are available on our Patient Meeting Presentations page.
  • September 22, 2024 – 2024 RFA Walk: Our community gathered together in person at the Houston Zoo and fundraised virtually around the world. Together, more than $55,000 was raised for desmoid tumor research! 

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!

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The DTRF International Research Workshop features:

  • Scientific talks on current research and treatment
  • A forum to share research findings, develop new collaborations, bring new scientists into the desmoid tumor research field, and discuss innovations that will lead to new treatments
  • Live questions/answers and discussions related to the scientific talks
  • Group discussions focusing on gaps in desmoid tumor science and how best to address them through high-impact collaborative research

The DTRF International Research Workshop is part of the DTRF Together We Will Weekend. In order to attend the Workshop, you need to register for the Weekend.

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The 2024 RFA Walk offers something for everyone; build a team, participate as an individual, create awareness, and help fundraise for a cure!

Running for Answers (RFA), founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009, is the annual DTRF signature fundraising event. This year, the desmoid tumor patient community and supporters will come together for the first-ever walk at the Houston Zoo as a unified force against desmoid tumors.

Register today and claim your fundraising page to start raising awareness, powering research, and advocating for desmoid tumor patients!

Don’t forget to register separately for the DTRF Together We Will Weekend!

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Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend.

It always takes place on Saturday, the day before our annual RFA Walk. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient.

Content is geared toward topics of interest to our patient and caregiver community. Physicians are also strongly encouraged to attend this foundational event of the Weekend. This meeting will be recorded and available on our website in the weeks following the event.

The Patient Meeting is part of the DTRF Together We Will Weekend. In order to attend the Meeting, you need to register for the Weekend.

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Together we will advance research, empower our community with information, foster connection, and fundraise for a cure.

We are excited to announce the DTRF Together We Will Weekend and RFA Walk is moving to Houston, TX on September 20-22, 2024!

Events include the DTRF International Research Workshop for medical and industry professionals, along with DTRF Patient Meeting for all attendees.

The annual DTRF Together We Will Weekend brings together patients, caregivers, researchers, clinicians and industry professionals to connect, collaborate, and learn!

Early bird registration is officially OPEN! Use code TWWHOUSTON20 at checkout for 20% off registration. REGISTER here!

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Jeanne Whiting, DTRF Executive Director Emeritus, and Lynne Hernandez, DTRF Executive Director, attended CTOS 2023 in Dublin, Ireland, November 1-4.

The team was honored to connect and collaborate with other patient advocacy groups, researchers, and industry professionals. The conference felt full of energy and the promise of accelerating the science toward more treatment options for desmoid tumors and all sarcoma patients.

Last year’s designation of desmoid tumors as Sarcoma of the Year propelled a year of groundbreaking research in our rare disease. Researchers from varied backgrounds presented multiple scientific posters about desmoid tumors.

SpringWorks Therapeutics Medical Science Liaison Mitchell Allen, PhD and DTRF Executive Director, Lynne Hernandez

The DTRF Patient Registry poster titled, “Characterizing the Patient Journey To Diagnosis of Desmoid Tumor: Desmoid Tumor Research Foundation Natural History Study” was presented at CTOS 2023 by SpringWorks Therapeutics Medical Science Liaison Mitchell Allen, PhD (pictured with Lynne Hernandez, DTRF Executive Director). It won first place in Category 1: Improving Sarcoma Care Globally!

This honor would not have happened without the participation of desmoid tumor patients and caregivers. They are the backbone of this research. Their vast and varied experiences are critical in guiding topics of future desmoid tumor research, and the DTRF is committed to elevating the patient voice wherever we can.

The poster was created in partnership with SpringWorks Therapeutics under the leadership of the DTRF’s Principal Investigator for the Registry, Kelly Mercier, Ph.D., and the poster’s first author, Shengfan Zhou, MS (SpringWorks).