The Desmoid Tumor Research Foundation
Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient. Content is geared toward topics of interest to our patient and […]
Community connections can be transformative and are essential to the patient and caregiver journey. Our Community Networking Event is a wonderful opportunity to have one-on-one, real-time conversations with fellow patients and caregivers. The event is structured to provide a natural way to get to know attendees and share experiences by connecting in small groups in […]
The RFA 5K & Fun Run, founded by desmoid tumor patient Sera Snyder in 2010, is our annual signature fundraising event and the celebratory finale of the annual DTRF Together We Will Weekend. The desmoid tumor community and supporters gather to walk, run, and roll on our accessible course together as a unified force against […]
The Ortwerth family invites you to the 5th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research!
If you are in the Grand Rapids area, come join Gabe and his local high school as they raise awareness and funds for the DTRF! Free Throw Contest @ Half-time. T-shirts will be available for purchase at the games. All proceeds from the event will go directly to the DTRF. If you can't attend this […]
Join the DTRF for the first night of the two-part special event: "Times Are A-Changin': Heading into Young Adulthood with a Desmoid Tumor." This event is exclusively designed for young adults with desmoid tumors (ages 18-39). Part One: Informational Zoom Webinar Have you been the youngest person in the oncology waiting room? Learn tips and […]
Join the DTRF for the second night of the two-part event: "Times Are A-Changin': Heading into Young Adulthood with a Desmoid Tumor." Tune in for a special "Speed Desmoidian-ing" virtual networking event just for young adults with desmoid tumors facilitated by two of their peers. Includes: 1-on-1 Breakout Rooms and Group Discussion to connect with […]
1st Annual WMK Classic (presented by WYL) Charity 3-on-3 Small Ball Lacrosse Tournament benefitting the DTRF in Winchester, Massachusetts. Contact Chris Froeb for more information: chrisfroeb@gmail.com
Athina's Ride is a cycling event that starts with training rides in the spring and culminates on July 13/14th weekend. You can either complete the ride on your own, with family & friends or join our ride led by Athina Merckx on the Saturday July 13th in Penticton, British Columbia. Come join Athina and support […]
On Thursday, September 5th at 4pm ET, join us for a webinar featuring Dr. Dale Shepard from the Cleveland Clinic. He will explain how impactful the testing of biomarkers is in the diagnosis and treatment of desmoid tumors. He will also touch on genetic testing in relation to CTNNB1 mutations. Register Here Dale R. Shepard […]
Celebrate Desmoid Tumor Awareness Month with us! On Thursday, September 11th at 3pm ET, join us for a Facebook Live featuring Megan Barrell, Desmoid Tumor Patient Advocate. The conversation will focus on Megan's lived experience and patient journey as a young adult with a desmoid tumor.
$100 - Per Player includes 18 holes w/cart, reception, drink tickets, raffles All proceeds go to support research for a cure through the Desmoid Tumor Research Foundation Location: Crestview Golf Course Learn more by downloading the event guide here!
Together we will advance research, empower our community with information, foster connection, and fundraise for a cure. We are excited to announce the DTRF Together We Will Weekend and RFA Walk is moving to Houston, TX on September 20-22, 2024! Events include the DTRF International Research Workshop for medical and industry professionals, along with DTRF […]
The DTRF International Research Workshop features: Scientific talks on current research and treatment A forum to share research findings, develop new collaborations, bring new scientists into the desmoid tumor research field, and discuss innovations that will lead to new treatments Live questions/answers and discussions related to the scientific talks Group discussions focusing on gaps in […]
Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. It always takes place on Saturday, the day before our annual RFA Walk. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient. Content is geared […]
The 2024 RFA Walk offers something for everyone; build a team, participate as an individual, create awareness, and help fundraise for a cure! Running for Answers (RFA), founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009, is the annual DTRF signature fundraising event. This year, the desmoid tumor patient community and supporters will come […]
The Ortwerth family invites you to the 6th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research! Register HERE for this special event.
Celebrate Desmoid Tumor Awareness Month with us! On Thursday, September 25th at 3pm ET, join us for a Facebook Live featuring Amanda MacKinnon, caregiver of a desmoid tumor patient. The conversation will focus on Amanda's caregiver journey.
Register today for the upcoming educational webinar hosted by the DTRF with special guests Bernd Kasper, MD, PhD, Professor, University of Heidelberg, Mannheim University Medical Center in Germany and Jean-Emmanuel Kurtz, MD, PhD, Professor of Medical Oncology from Strasbourg University- Hôpitaux Universitaires de Strasbourg in France. During this webinar, Dr. Kurtz will talk about how […]
The JoeStrong Volleyball Tournament is back again! Scan the QR Code or click on the event website link below to register for this fun annual event in Austin, TX.
Support the DTRF at the El Tour de Tucson by registering for the race and picking the DTRF as your charity. We hope you participate in this year’s event on November 23, 2024. You won’t be alone given that annually over 9,000 cyclists participate in the renowned and popular event! Register Here
