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2017 DTRF Golf Outing


Date: June 12, 2017 Location: Tuxedo, NY Over 125 guests enjoyed DTRF’s second Golf Outing at the beautiful Tuxedo Club in Tuxedo, NY, on Monday, June 12th.  Afterwards, attendees enjoyed a cool breeze with dinner on Tuxedo Lake. All funds raised were donated to desmoid tumor research. Registration brochure here.    

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2016 Patient Meeting Presentations

Below you will find slides from some of the presentations at our September 24th Patient Meeting. Save the date for next year’s meeting on Saturday, September 23rd in Philadelphia.   Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University. Slide Presentation: “Collaboration for a Cure: what we’ve learned so far.” VIDEO of Patient Meeting Presentation   […]

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Fourth Annual Desmoid Dash

The DTRF thanks (and congratulates) the donors, participants, sponsors and organizers of the 4th annual Desmoid Dash in Mendota Heights, Minnesota. This 5K event, created in honor of survivor Matt Zechmann, raised over $91K this morning and has raised over $332K since inception in 2013! Unbelievable! Follow the Desmoid Dash on Facebook here.

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DTRF’s Natural History Study

A natural history study is a type of study/registry that follows a group of people over time who have, or are at risk of developing, a specific medical condition or disease. The Desmoid Tumor Research Foundation has been selected as one of 20 rare disease patient groups who will develop a natural history study with the assistance of the […]

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DTRF Golf Outing


DTRF hosted over 135 golfers and over 170 dinner attendees at the beautiful Tuxedo Club in Tuxedo, NY, on Monday, June 13th.  Attendees enjoyed the spectacular setting along with dinner on Tuxedo Lake. All funds will be donated to desmoid tumor research, and DTRF thanks the volunteer committee who worked countless hours to help organize this special event. […]

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Donating Tissue Samples

If you’re contemplating surgery, the Alman Lab at the Hospital for Sick Children in Toronto, Canada, is asking for freshly-resected desmoid tumor samples. These will be used for ongoing DTRF-funded research. If you’re interested or for more information, please contact Mushriq Al-Jazrawe at mushriq.al.jazrawe@mail.utoronto.ca (416-813- 7210) or Val Cabral at val.cabral@sickkids.ca (416-813-2178).

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2015 Patient Meeting Presentations

Below you will find slides from some of the presentations at our October 17th Patient Meeting. Save the date for next year’s meeting on Saturday, September 24th in Philadelphia.   Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University Presentation on “Collaboration for a Cure: What We’ve Learned So Far.” Bernd Kasper, MD, PhD, Mannheim University Medical […]

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Clinical Trials

Sorafenib DTRF has been advised that as of January 4th, the Nexavar/ Sorafenib Phase III clinical trial has met its accrual goal and stopped recruiting new patients. Current participants will continue with their treatment protocol.   Fluorine (F)-18 16 alpha-fluoroestradiol (18F-FES) positron emission tomography (PET)/computed tomography (CT) Vanderbilt is currently enrolling patients for an institutionally approved imaging […]

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DTRF’s Patient Reported Outcome (PRO) Tool

We are thrilled to announce that the groundbreaking DTRF Patient Reported Outcome (PRO) tool is ready for implementation in a clinical trial. The tool, funded by DTRF, has been developed in collaboration with Memorial Sloan Kettering Cancer Center and Quintiles, a leading PRO company. The tool consists of questionnaires designed to glean data on the […]

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