Research, Advocacy, Awareness, and Support
The Desmoid Tumor Research Foundation is the world’s leading foundation dedicated to desmoid tumor research, advocacy, awareness, and support.
The priority of the DTRF is to facilitate cutting-edge collaborative research by funding research projects at the world’s top sarcoma centers in basic and translational science and clinical trials. This research seeks to determine what goes wrong in cells to generate these tumors, what medical and surgical options work best, and what existing drugs or potential new drugs could provide effective treatments. In addition to funding research, the DTRF facilitates collaboration between researchers from different institutions to advance desmoid tumor science.
We are just getting started.
With the recent FDA approval of Ogsiveo™ (nirogacestat) as the first-ever approved medical therapy for desmoid tumor patients, our hope continues to thrive! An approval like this propels research and interest in desmoid tumors. The DTRF will continue to aggressively fund research projects and collaborate with industry to accelerate the development of additional therapies toward a cure for each and every desmoid tumor patient.
Our Impact
DTRF-funded research has made significant, record-breaking advancements in our understanding of the disease.
Discoveries made through desmoid tumor research can also potentially have a significant impact on many other more common cancers such as breast, colon, ovarian, and others. We’ve seen exciting progress along the way and the results of this work have never been so clear: The number of clinical trials for desmoid tumor patients that launched in just the last 9 years is greater than the number of trials launched throughout the prior 23 years. In the last 10 years, we’ve seen an increase in the launch of phase II clinical trials and the first phase III trials for desmoid tumor patients.
Every trial
is a possible answer for our community
Every trial
tells us more
Every trial
is hope
After more than a decade of collaboration among advocates, patients, industry, and medical professionals, the U.S. Food and Drug Administration (FDA) has granted approval to SpringWorks Therapeutics for its gamma secretase inhibitor, OGSIVEO™ (nirogacestat), for the treatment of adults with progressing desmoid tumors.
This drug is the first-ever FDA-approved medical therapy for desmoid tumors and represents a beacon of hope for desmoid tumor patients.
Below are examples of some of the ways that the DTRF impacts the research community:
- Annual International Research Workshop for Medical Professionals
- Research Grants
- Collection of published Desmoid Tumor Research
- The DTRF compiles a comprehensive collection of articles and links to published desmoid tumor research, making them accessible to physicians, researchers and patients around the world
- Facilitation of and connecting patients to clinical trials
- Tissue Sample Donations
Impact at Record-Breaking Speed
The DTRF is co-founded by Jeanne Whiting, Desmoid Tumor Patient, and Marlene Portnoy, Desmoid Tumor Caregiver
The DTRF is founded as a labor of love to fund research and find answers for the desmoid tumor community. Fundraising begins upon obtaining 501(c)(3) status.
The DTRF Funds its First 3 Research Grants at MD Anderson, Hospital for Sick Children, and Huntsman Cancer Institute
This would eventually grow into raising millions of dollars to fund dozens of grants at top sarcoma research institutions around the world over our history.
The DTRF Hosts First Patient Meeting
Just outside of NYC, ~30 people attend the meeting where 1 doctor speaks. Today, the DTRF’s annual Patient Meeting attracts hundreds who hear from a slate of experts from top research institutions in the U.S. and around the world.
Running for Answers/RFA 5K is Founded by Desmoid Patient Sera Snyder in Philadelphia
This evolves into the DTRF’s largest annual signature fundraiser celebrating the desmoid community while raising research dollars
The DTRF Hosts First International DTRF Desmoid Tumor Research Workshop
In Philadelphia, PA, >20 doctors participated in this full day workshop. Today, our annual Workshops attract hundreds of attendees from prestigious institutions around the globe.
The DTRF Presents at the Annual Connective Tissue Oncology Society (CTOS) Conference in Berlin
This is followed by many presentations at important medical conferences.
The DTRF Funds the Development of the First Desmoid Patient-Reported Outcome (PRO) Tool
The purpose of this tool (called GODDESS) is to have the patient’s voice heard and pave the way for new endpoints in clinical trials. Partnering with Mrinal Gounder, MD at Memorial Sloan Kettering and PRO leaders at IQVIA, the tool would be validated in clinical trials gathering important data on patient quality of life and response to treatment.
The DTRF Funds Successful Development of a Desmoid Tumor Frog Model (Xenopus Tropicalis)
This development opened the way to more desmoid research.
The DTRF Funds Development of Transgenic Mouse Models
Important discoveries are made concerning the challenges of developing a mouse model that mimics the human disease.
The DTRF Partners with Pattern.org’s Tissue Donation Program
This revolutionary program allows patients to advance research by consenting online to the collection of live desmoid tumor tissue during surgery.
The DTRF Launches the DTRF Patient Registry and Natural History Study
With the support of NORD and the FDA, the DTRF begins collecting data which informs the Natural History Study of the disease – a huge step forward in desmoid science.
The DTRF Hosts its First international Quarterly Virtual Tumor Board in Partnership with Moderator Dr. Aaron Weiss
The Board allows doctors to present a patient’s case from anywhere in the world for input from desmoid tumor experts.
The DTRF Hosts its First Regional Patient Meeting in Salt Lake City, UT
~50 people attend the meeting where doctors from major nearby institutions present.
The DTRF Helps Fund the Global Consensus Paper on Desmoid Tumor Management
This scientific paper, and the patient-friendly version, become an invaluable resource to doctors and patients worldwide.
NEJM Publishes Successful Phase III Trial of Sorafenib in Desmoid Tumors
Per study PI, Dr. Mrinal Gounder, the DTRF provides “record-breaking” accrual during recruitment phase. Study is named by ASCO as an “Advance of the Year” and one of the top breakthroughs in Oncology in 2018.
The DTRF Initiates Desmoid Tumor Awareness Month
Building on a patient-driven campaign, the DTRF claims the month of September on behalf of the international patient community to promote awareness for desmoid tumors.
The DTRF Publishes Data Gleaned from the Natural History Study
This is published at the 2019 National Organization of Rare Disorders (NORD) Breakthrough Summit and was the first of several NHS posters and papers at medical conferences.
The DTRF Hosts its First Virtual DTRF Patient Meeting
Determined to stay connected during the COVID-19 pandemic, the meeting gathered 170 participants from 21 different countries.
The DTRF Hosts its First Virtual International Research Workshop
The workshop hosted almost 200 registered attendees from 72 institutions in 32 different countries.
The DTRF Launches the DTRF Research Coordination Core
The goal was set to facilitate collaboration and sharing of desmoid research among researchers worldwide.
The DTRF Participates in an FDA Patient Listening Session on Desmoid Tumors
Patients share disease impact to convey the importance of recognition and support by government agencies.
The DTRF Establishes its Patient Advocacy Committee (PAC)
This included 30+ volunteers for collaboration and a deeper connection to the patient voice.
The DTRF is Recognized Nationally by NORD
The DTRF receives the NORD Abbey S. Meyers Leadership Award.
The DTRF Presents to CDC to Obtain New ICD-10 Codes
The codes are specific to the diagnosis of desmoid tumors, including subcategories for tumor location. The codes are approved in May 2023, and implemented in October, 2023
The DTRF Hosts First Global Desmoid Tumor Roundtable
The roundtable was for international desmoid advocacy and community groups worldwide. The conversation focused on needs and challenges of advocacy.
The DTRF is Recognized Internationally with Award from Global Genes
Global Genes named the DTRF the RARE Champion in Advocacy (Foundation).
The DTRF Convenes Radiomics Working Group to Change the Future of Imaging in Desmoid Tumors
Academic institutions and pharma join to improve how imaging is used to monitor change and track drug response in desmoid tumors, moving toward new clinical trial endpoints.
The DTRF Opens as a Site for International Pregnancy and Desmoid Tumors Study
This study partners with international healthcare and patient advocacy organizations to learn more about the decisions women make regarding pregnancy after a desmoid tumor diagnosis.
The DTRF Partners with PeerView to Provide CME Accredited Programming on Desmoid Tumors
This information is available on our website.
Desmoid Fibromatosis is Named “Sarcoma of the Year” at the CTOS Annual Conference in Vancouver
The DTRF speaks first at a special desmoid tumor webinar associated with the conference.
New Drug Application (NDA) Filed
The DTRF advocates for almost a decade for clinical trials in the promising desmoid tumor treatment nirogacestat. After a successful Phase 3 trial, Springworks Therapeutics files a new drug application. If approved by the FDA, this will be the first drug approved in desmoid tumors! The trial is published in the NEJM.
DTRF-funded Research at The Broad Institute Creates the First Publicly Available Desmoid Tumor Cell Line
Now available for purchase at the ATCC. Second cell line sent to ATCC shortly thereafter.
ICD-10 Code Approval
New ICD-10 diagnosis codes for desmoid tumors are implemented 2023, beginning an era of more accurate data for research and improved patient care.
FDA Approves OGSIVEO™ (nirogacestat)
After more than a decade of collaboration among advocates, patients, industry, and medical professionals, the U.S. Food and Drug Administration (FDA) has granted approval to SpringWorks Therapeutics for its gamma secretase inhibitor, OGSIVEO™ (nirogacestat), for the treatment of adults with progressing desmoid tumors.
This drug is the first-ever FDA-approved medical therapy for desmoid tumors and represents a beacon of hope for desmoid tumor patients.
Dr. Mrinal Gounder
Dr. Gounder on the DTRF’s Perseverance with Sorafenib
Continue Exploring
Virtual Tumor Board
Annual Weekend
Our annual DTRF Together We Will Weekend is a time for patients, family, and friends to connect with each other and participate in informative lectures and roundtables on desmoid tumors and race/walk in our Running for Answers 5K.
Power Research with the DTRF Patient Registry
