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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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“CARRIE ON” Walk-a-thon & Picnic

Nancy Deibel hosted a walk-a-thon in Hemlock, MI, in memory of her daughter, Carrie, who lost her battle with desmoid tumors. The event included a 50/50, bake sale and silent auction in support of DTRF. Special thank you to the Deibel family for their support.

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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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Thomas Paron to conquer Vermont City Marathon

Thomas Paron will be running the Vermont City Marathon on May 30th on behalf of DTRF. Thomas knows of 2 people affected by desmoid tumors, and this is put him into action! With a goal of $10,000, he is close to his goal! Special thank you to Compass Capital Management which will be providing a […]

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Pong-a-Palooza: Charity Beer Pong Tournament on behalf of DTRF

Special thank you to Claudia Gomez, along with her family and friends for hosting Pong-A-Palooza, a charity beer pong tournament on May 14, 2016 in Philadelphia! This special event hosted over 50 teams in this double elimination tournament! Here are the rules she used below: Cost is $30/person ($60/team) and all proceeds go to DTRF-  Cost […]

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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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