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The Desmoid Tumor Research Foundation

DTRF Leadership Team Attends CTOS 2023

Jeanne Whiting, DTRF Executive Director Emeritus, and Lynne Hernandez, DTRF Executive Director

CTOS

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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).

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Desmoid tumors were in the spotlight at the 2022 Connective Tissue Oncology Society (CTOS) annual conference in Vancouver, Canada last weekend!

Designated the “Sarcoma of the Year” for this year’s event, “Desmoid Fibromatosis” was the focus of an informative special session on Saturday which featured presentations on active surveillance, cryoablation, metronomic therapy, and the DeFi Phase 3 clinical trial results.

The session was chaired by Torsten Nielsen, MD, PhD, (Department of Pathology at Vancouver General Hospital) with moderators Chiara Colombo, N/A, MD (Fondazione IRCCS Istituto Nazionale dei Tumori) and DTRF Medical Advisory board member Bernd Kasper, MD PhD (University of Heidelberg, Mannheim University Medical Center).

We are grateful to CTOS for giving desmoid tumors this highlight, and to the doctors and researchers involved in the hopeful research presented to the global sarcoma medical community.

For more information, watch the recordings of the 2022 DTRF Patient Meeting Webinars on two of the topics mentioned at CTOS:

DTRF Patient Meeting Webinar #2: Cryoablation
DTRF Patient Meeting Webinar #2: Nirogacestat – DeFi Phase 3 Results

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*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.

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Thank you to the Connective Tissue Oncology Society (CTOS) for hosting “Desmoid Fibromatosis”, a webinar aired in advance of the 2022 CTOS Annual Meeting to further educate sarcoma professionals on #desmoid tumors and the patient experience.

Watch the recording of the event

The DTRF’s Executive Director Jeanne Whiting presented “Patients’ Perspective: Navigating the Desmoid Tumor Journey”, and other presenters covered pathobiology, pathology, and localized and systemic treatment options currently available for desmoid tumors. The webinar ended with a thoughtful dialogue between experts on current challenges.

We are grateful for this coveted spotlight and want to thank all who attended hoping to learn more about this #raredisease and its impacts. 

DTRF Executive Director Jeanne Whiting thanked the community after her presentation:

“I want to thank everyone who helped me share the desmoid tumor patient story in this talk. I received almost a hundred patient comments and stories submitted by email. I wish I could have shared everyone’s story, but I hope I was able to convey the major issues we face along with the emotion and meaning behind your comments. It was a wonderful opportunity to have this special CTOS webinar focused on our disease and to let the patients’ voices be heard!”

We look forward to hearing more about the “Sarcoma of the Year” at #CTOS2022 in November!

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*Update: Watch the CTOS webinar on Desmoid Tumors*

The Connective Tissue Oncology Society (CTOS) – a prestigious organization of multidisciplinary sarcoma medical professionals – has named desmoid fibromatosis as the “Sarcoma of the Year” for their 2022 annual meeting this fall.

As part of this honor, the DTRF’s Executive Director Jeanne Whiting will present “Patients’ perspective: navigating the desmoid tumor journey” during a special webinar that will be aired by CTOS on Thursday, October 20th from 10am – 12pm ET.

The webinar will feature pre-recorded contributions from a patient advocate and 15-minute educational sessions on the pathobiology, pathology, and localized and systemic treatment options currently available for desmoid tumors. The webinar will finish with a dialogue between experts on current challenges.

The aim of the webinar is to bring all members to a good basic level of understanding of the “Sarcoma of the Year” in preparation for the CTOS Annual Meeting taking place a few weeks later in November.

Stay tuned for information about how to access this webinar.

We look forward to this opportunity to increase awareness about desmoid tumors and the patient experience with the global sarcoma community this fall.