lynneh, Author at Desmoid Tumor Research Foundation - Page 3 of 5
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Second Annual Beer Pong fundraiser in NYC

Once again, Brittany Longenbach and Danielle Portnoy have joined forces to organize a beer pong at Brother Jimmy’s in Murray Hill from 12-3pm on 11/13. This event raised over $3,000! Special thanks to these ladies and everyone who participated!   Here’s a message from Brittany and Danielle prior to the event: As many of you know, […]

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Desmoid Tumour Foundation of Canada- DFC

A Canadian entity has been formed for the purpose of raising funds in Canada for desmoid tumor research called the Desmoid Tumour Foundation of Canada (DFC).  It has just received Canadian government approval of charitable status. The entity was established so Canadian donors would be able to make tax-deductible donations to support desmoid tumor research projects.  […]

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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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“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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