Western Regional Patient Meeting - Desmoid Tumor Research Foundation

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 on desmoid tumors. Patients will have the opportunity to mingle and ask questions.

Attendees will also have an opportunity to fundraise for the Foundation.

Register here



The 2018 Western Regional Patient Meeting will take place on Saturday, April 28th from approximately 12-5pm in Salt Lake City, Utah. The meeting will be held at The Little America Hotel.

Book your rooms (at The Little America) early here for call 1-800-437-5288. There is a block of rooms available at $139 per night (for evenings of April 27th & 28th). This group rate will be available until Friday, April 6th.

Transportation to/from the airport: There is the TRAX light-rail ($2.50 one-way) that picks up half a block from the hotel and is about a 26-minute ride to the airport.  City Creek Limousine can do pre-arranged airport arrivals for $25.00 (up to 3 guests) and airport departures for $12 per person (or $25.00 for up to 3 guests). To schedule arrival pickup, guests need to call 855-779-9045, for departures they can sign up at the bell desk.

Local restaurants


Our list of distinguished speakers include:

  • R. Lor Randall, MD, FACS, Director of Sarcoma Services, Huntsman Cancer Institute, University of Utah, “Desmoid tumors:  the nonmalignant malignancy.” 
  • Raffi Avedian, MD, Assistant Professor of Orthopedic Oncology at The Stanford University Medical Center, “Magnetic Resonance Guided Focused Ultrasound Treatment for Desmoid Tumors.”
  • Jonathan Northrup, CEO, Chief Medical Officer, Beta Cat Pharmaceuticals, “Tegavivint (BC-2059), an emerging potential treatment for desmoid tumors.”
  • L. Mary Smith, PhD, Vice President of Clinical Development, SpringWorks Therapeutics, “Phase 3 Nirogacestat Clinical Study Update.”
  • Victor Villalobos, MD, PhD, Assistant Professor, Medical Oncology, University of Colorado- Denver, “Nirogacestat (a Gamma Secretase Inhibitor) in Desmoid Tumors.”
  • Kelly Mercier, PhD, Principal Investigator, DTRF Desmoid Tumor Patient Registry, “The Natural History of Desmoid Tumors: What we are learning from the DTRF Patient Registry and Natural History Study.”
  • Musical performance by DeAnn Sorenson, co-administrator of The Desmoidian, desmoid tumor patient & advocate.


Thank you to our event sponsor, Beta Cat Pharamaceuticals, Inc.