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.

Travel and restaurant information: See below.


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.

Local restaurants


Make a weekend of it when you book your trip to the Patient Meeting! There are lots of great things to do in Salt Lake City. Here are some of the local favorites.

  1. Red Butte Garden (open daily)

Red Butte Garden and Arboretum consists of a botanical garden, arboretum, and amphitheatre operated by the University of Utah, in the foothills of the Wasatch Range in Salt Lake City, Utah, United States. It is open year-round to the public.                        

  1. Gardner Village(closed Sundays)

Stroll brick-lined paths and discover 22 boutique-style, locally-owned shops surrounding the historic Gardner Mill. With the ambiance and charm of an early Utah Village, you’ll enjoy shopping and dining in a leisurely-paced setting, just 12 miles south of downtown Salt Lake City in the heart of the Salt Lake Valley. Spend the afternoon or day milling around Utah’s favorite shopping, dining and historic experience.

  1. Thanksgiving Point (closed Sundays)

Gardens, an interactive farm, cafes, shops & the Museum of Ancient Life.

  1. Olympic Parkin Park City, open daily

Built for the Salt Lake 2002 Olympic Winter Games, Utah Olympic Park is located in Park City, just 25 miles east of Salt Lake City, Utah. The nearly 400 acre venue houses one of only four sliding tracks in North America, six Nordic ski jumps, a 2002 Winter Games museum, and a multitude of adventure activities.

  1. Temple Square(open daily, free; some buildings are closed on Sundays)

You’ll be immersed in 35 acres of enchantment in the heart of Salt Lake City. Whether it’s the rich history, the gorgeous gardens and architecture, or the vivid art and culture that pulls you in, you’ll be sure to have an unforgettable experience.

  1. Family History Library (free; closed on Sundays)

Family History Centers are branches of the Family History Library in Salt Lake City Utah operated by The Church of Jesus Christ of Latter-day Saints (LDS Church). The centers supply resources for research and study of genealogy and family history. Largest genealogical library in the world.

  1. Bridal Veil Falls

Bridal Veil Falls is a beautiful natural waterfall in scenic Provo Canyon. The trail to the falls is open year-round, although accessibility may be limited in the winter months due to snow. Bridal Veil Park sits next to the Provo River and is a short walk down the paved Provo River Parkway Trail to Bridal Veil Falls.

Just a short drive from the mouth of the canyon on Hwy 189, Bridal Veil Falls Park has picnic tables with barbecue grills, plenty of parking (in a couple of parking lots), as well as grassy picnic spots.

  1. The Great Salt Lake’s Antelope Island

With an area of 42 square miles, this island is the largest of 10 islands located within the Great Salt Lake. Features buffalo and other wildlife.

  1. Hogle Zoo (open daily)

Utah’s Hogle Zoo is a 42-acre zoo located in Salt Lake City, Utah. It houses animals from diverse ecosystems. It is located at the mouth of Emigration Canyon.

  1. Natural History Museum (open daily)

The Natural History Museum of Utah is a museum located on the campus of the University of Utah in Salt Lake City, Utah, United States. The museum shows exhibits of natural history subjects, with an emphasis on Utah and the Intermountain West.

  1. Guided bus tours through Salt Lake City (buses have tours available daily)
  2. Bingham Copper Mine(Visitor Center is closed)

The Bingham Canyon Mine, more commonly known as Kennecott Copper Mine among locals, is an open-pit mining operation extracting a large porphyry copper deposit southwest of Salt Lake CityUtah, in the Oquirrh Mountains. The mine is the largest man-made excavation in the world and is considered to have produced more copper than any other mine in history

Top 10 hikes near Salt Lake City

How to get around?

There are bike rentals all over the city. There is a light rail system and Uber; those are probably the best option to get around unless you rent a car.