The Desmoid Tumor Research Foundation
In honor of Rare Disease Day this year, join us LIVE on Facebook on February 27th, at 6 PM ET for a conversation with desmoid tumor patient, Amy Beitz! You don't want to miss Amy share her desmoid tumor story. To join the event and ask questions, visit our Facebook Live Event link in our […]
Running for Answers (RFA) is going VIRTUAL! Even though there won't be an in-person run or walk this year, help the DTRF carry on the RFA tradition and make a bigger impact by launching a virtual fundraiser today! Running for Answers was founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009 and quickly became DTRF's annual fundraising […]
Join us for a conversation about the classification and language used to describe desmoid tumors. We'll hear about the challenges in communication faced by both patients and doctors, and what we - and you! - can do moving forward to help alleviate misunderstandings about this rare disease. Special Guests include: ✨️ Ravin Ratan, MD, Associate […]
Support Nick Plant on his DTRF fundraising journey. A Note from Nick: This year, I’ve decided to take on the Lakeland Trails 100km Ultra run in support of the Desmoid Tumour Research Foundation (DTRF). This charity does incredible work, they aggressively fund desmoid tumor research, accelerate the development of improved therapies, drive collaborations among clinicians and researchers worldwide, and […]
$100 - Per Player includes 18 holes with golf cart, reception, drink tickets & raffles All proceeds of this event go to support research for a cure through the Desmoid Tumor Research Foundation! Location: Crestview Golf Course - Zeeland, Michigan Learn more by downloading the event guide here!
Online registration is closed. In-person registration is still available at event check-in. Join us for the 2025 DTRF Together We Will Weekend in Chicago, IL on September 12-13 (Fri/Sat)! Featured events include the DTRF International Research Workshop for medical and industry professionals, along with the DTRF Annual Patient Meeting for all attendees. The annual DTRF Together We Will Weekend brings together patients, caregivers, researchers, clinicians and […]
The Ortwerth family invites you to the 7th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research! Register HERE for this special event.
TRIBE is organizing the first annual “Rock for a Cure” concert featuring Batterhead and Tom Fills for an amazing charity near and dear to our hearts - Desmoid Tumor Research Foundation. DTRF is funding grants for groundbreaking research into why desmoid tumors spontaneously regress--without any treatment--at a rate nearly 10 times as frequently as with […]
Join us LIVE on Facebook and Instagram in honor of Rare Disease Day! On Thursday, February 26th at 5 PM ET, Morgan will share her personal journey living with a desmoid tumor. She’ll discuss the challenges, uncertainties, and resilience that so many in the desmoid community know firsthand. This live event is an opportunity to […]
Help us Spread the Word by joining the Desmoid Tumor Research Foundation on March 24th from 6-7 PM ET for an educational webinar exploring desmoid tumor diagnosis, pathology classification, and the real-world impact these distinctions have on treatment decisions and patient wellbeing. This multidisciplinary discussion will examine how desmoid tumors are identified and categorized, what […]
In honor of Sarcoma Awareness Month, the Desmoid Tumor Research Foundation (DTRF) invites you to a new story-sharing event featuring Amanda is an artist and keynote speaker who is both an Ewing’s sarcoma survivor and currently living with a desmoid tumor. This special virtual event will offer a comforting and supportive space to hear Amanda’s […]
Join the Augdahl Family for a golf tournament in Zeeland, Michigan! Date: August 30, 2026 Time: 12:00PM registration with 1:00PM shotgun Cost: $125.00 per person Location: Crestview Golf Course - Zeeland, Michigan All proceeds of this event go to support research for a cure through the Desmoid Tumor Research Foundation. Contact: Christ Augdahl (616) 890-6197 […]
Join the DTRF as we officially launch Desmoid Tumor Awareness Month (DTAM) with a virtual gathering centered on connection and shared experiences! Designed with input from DTRF Ambassadors, this patient-centered event will welcome people at every stage of the desmoid tumor journey, including those who are newly diagnosed, longtime community members, and caregivers. Attendees will […]
