lynneh, Author at Desmoid Tumor Research Foundation
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2018 DTRF Western Regional Patient Meeting

The DTRF Western Regional Patient Meeting convenes patients and family members in Salt Lake City for an afternoon of connecting with other desmoid tumor patients and participating in informative lectures and roundtables on desmoid tumors. Attendees will also have an opportunity to fundraise for the Foundation. Save the date to join us! Stay tuned for registration […]

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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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Vendor Bingo on March 20, 2016

Special thank you to Rochelle Miller and Corrine Conrad for organizing this event with their amazing volunteer committee which took place at the Kutztown Fire Company! This event benefited Austin’s Fibromatosis Research Foundation and DTRF!

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Paint for a Purpose on November 19, 2015

Survivor Whitney Gramm hosted an evening of fun and creativity on November 19th at 6:30 at The Axis (prior Hancock Efree Church), 2 Fairview Lane, Hancock, MN. Food, snacks and beverages were provided, along with a silent auction to raise funds for DTRF!  

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Pop-Up Party on October 23, 2015

On October 23, Faith Zucker invited friends and family to a special event in her home featuring a silent auction including Browns memorabilia, photos, a house cleaning package, chiropractic package, free Great Big Home and Garden Show tickets, a free oil change, tickets to a rock event, baked goods and holiday baskets. Tickets were $40 […]

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Beer Pong Tournament on October 4, 2015

Brittany and Danielle Portnoy hosted their own Beer Pong Tournament at Gael Pub in Manhattan on Saturday, October 4th! With over 80 of their closest friends, they played and gave awards to the top winners. They can’t wait to organize another event next year!  

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10th Annual Lap4Life on June 16, 2018

The Casabianca and Reade families invite you to save the date for another Lap4Life event in Newburgh, NY on June 16, 2018! This run/walk/community health fair is dedicated to the memory of Dr. Angelo Casabianca who lost his battle to desmoid tumors. Proceeds support desmoid tumor research and organ donation. This family event includes great food, […]

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