Regional Patient Meetings - Desmoid Tumor Research Foundation

Regional Patient Meeting

The DTRF Regional Patient Meetings convene patients and family members for an afternoon of connecting with other desmoid tumor patients and participating in informative lectures on desmoid tumors. Patients have the opportunity to mingle and ask questions.

Attendees also have an opportunity to fundraise for the Foundation.


The 2019 Regional Patient Meeting took place on Saturday, April 13th at the Embassy Suites- San Francisco Airport in South San Francisco, CA.

Registration opened at 11am and the meeting ran from 12-5pm.

View event photos here.


Our presenters were:

Kristen Ganjoo, MD, Associate Professor of Medicine (Oncology) & Director, Stanford Sarcoma Program, Stanford University Medical Center.

“The Stanford Desmoid Tumor Board.”



Pejman Ghanouni, MD, PhD, Assistant Professor of Radiology, Stanford School of Medicine.

“Treatment of desmoid tumors with magnetic resonance imaging guided High Intensity Focused Ultrasound (HIFU) and cryoablation.”



Casey Cunningham, MD, Chief Medical Officer, Iterion Therapeutics (formerly Beta Cat Pharmaceuticals, Inc.).

“Update on the recent launch of Phase I trial for Tegavivint.”



Shivaani Kummar, MD, FACP, Director of the Translational Oncology and Phase I Clinical Research Programs, Stanford University.

“Targeted treatments for desmoid tumors.”


L. Mary Smith, PhD, VP of Clinical Research & Development, SpringWorks Therapeutics.

“An update on Phase III trial of Nirogacestat.”


Matthew van de Rijn, MD, PhD, Professor, Department of Pathology, Stanford University Medical Center.

“The pathology of desmoid tumors.”



Jeanne Whiting, President and Co-Founder of DTRF

“The DTRF’s accomplishments.”



Breelyn Wilky, MD, Associate Professor & Director of Sarcoma Translational Research, University of Colorado School of Medicine.

“Desmoid tumors: Understanding treatment options in 2019.”



Chris Barry, FAP and desmoid tumor patient.



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

Event photos were provided by Farrell Lafferty.

Our list of distinguished speakers included:


Lor Randall, MD, FACS, Director of Sarcoma Services, Huntsman Cancer Institute, University of Utah, “Desmoid tumors:  the nonmalignant malignancy.” 

Dr. Randall is a Professor of Orthopaedics and The L.B. & Olive S. Young Endowed Chair for Cancer Research. He has a busy quaternary referral clinical practice specializing in musculoskeletal surgical oncology. Dr. Randall also Co-Directs the Huntsman-Intermountain Adolescent & Young Adult Oncology Program.

As an active researcher, he Co-Leads the Sarcoma Disease Oriented Research Team overseeing collaborative, across-department research budgets. The Sarcoma Services at HCI, because of its comprehensive experience in sarcomas, is continually developing and refining institutional based research and treatment protocols to improve the outcome in these rare but highly malignant conditions. HCI is a SARC participant and is also very active in the Children’s Oncology Group.

Presentation here.


Raffi S. Avedian, MD, Assistant Professor of Orthopaedic Surgery, Stanford University, “Magnetic Resonance Guided Focused Ultrasound Treatment for desmoid tumors.”

Dr. Avedian is an orthopaedic surgeon who specializes in caring for patients, adults and children, with bone and/or soft tissue tumors.   His clinical and research efforts focus on developing and refining treatment strategies for patients with musculoskeletal tumors.

This work is pursued in two separate but related pathways.  The first is in refining surgical techniques for extremity tumors and the second is in developing MR guided HIFU as a novel treatment modality for extremity soft tissue tumors. Current treatment modalities for sarcoma and desmoid, including surgery, radiation, and chemotherapy are associated with significant morbidity and side effects such as wound infections, fibrosis, edema, severe nerve injury, and prolonged disability.

New treatment strategies that can either improve tumor control or decrease treatment related morbidity are needed.  Dr. Avedian, along with his collaborators in the Radiology Department at Stanford University, have received federal funding to develop MRI guided focused ultrasound as a technique to treat desmoid tumors and continue to work on improving its effectiveness and indications for use.

Presentation here.   Video of talk here


Jon Northrup, CEO & Co-Founder, Iterion Therapeutics (formerly Beta Cat Pharmaceuticals, Inc.), “Tegavivint (BC-2059), an emerging potential treatment for desmoid tumors.”

Jon is CEO of Beta Cat Pharmaceuticals, a Houston based biotech developing a small molecule inhibitor of beta catenin. The program should begin clinical studies this year. Unlike other programs, Beta Cat’s is unique in drugging the pathway right before transcription at the very bottom of the pathway. We believe this holds promise for an inhibitor that is more specific and potent than any other program currently in development.

Jon has been CEO of Beta Cat since its founding and he is also a co-founder of the company. Prior to that, Jon was COO of Jubilant Innovation, the venturing arm of a large Indian CRO, founding partner of Horizon Biotechnologies, and a VP in Business Development, and many roles in Sales and Marketing for Eli Lilly and Company.

Presentation here.    Video of talk here.


Yating Wong, Mother of pediatric desmoid tumor patient

Yating Wong is currently the Associate Director of Marketing for Brita, a brand dedicated to transforming the way Americans drink better water without bottled water waste. She’s passionate about enabling others to flourish and embrace new challenges together. For the last 6 years, she’s worked at The Clorox Company managing brands such as Kingsford Charcoal, Hidden Valley, Glad Trash and spearheading eCommerce growth with Amazon.

Prior to Clorox, she worked at Kraft Foods and various social enterprises. She holds her MBA from Northwestern’s Kellogg School of Management and graduated magna cum laude from The Wharton School at the University of Pennsylvania. She is also the proud mom of Isaac Wong, a 19 month old toddler.


Victor Villalobos, MD, PhD, Assistant Professor, Director of Sarcoma and T3 (Target-based Therapeutics Team), University of Colorado- Denver, “Nirogacestat (a gamma secretase inhibitor) in desmoid tumors.” 

Dr. Villalobos is a Medical Oncologist specializing in sarcoma and early phase drug development. His primary interest are in the development of novel immunotherapeutic combinations and targeted therapies for the treatment of both soft tissue and bone sarcomas. At his institution they see over 250 new sarcoma cases each year and serve as a regional center of expertise within the Inter-Mountain West.

Presentation here.   Video of talk here.


Mary Smith, PhD, Vice President of Clinical Research & Development, SpringWorks Therapeutics, “Phase 3 Nirogacestat clinical study update.”

Mary Smith joined SpringWorks Therapeutics at launch in 2017 to lead Clinical Research and Drug Development. She brings over 20 years of research and clinical development experience from both pharmaceutical- and biotechnology-focused companies. She has experience in all stages of drug development from target discovery through all phases of clinical development and commercial launch. Most recently, Mary was the executive director of gene therapy at Bamboo Therapeutics, a wholly owned subsidiary of Pfizer where she led several key gene transfer programs for rare genetic diseases.

Prior to joining Bamboo, Mary spent 12 years at United Therapeutics as the vice president of product development. In that role, she was head of biologics development in oncology, with additional responsibility for regenerative medicine and virology. Specifically, she led the multi-disciplinary team responsible for the clinical development and approval of Unituxin®, the first approved immunotherapy for the treatment of high-risk neuroblastoma in the U.S. and EU. She also managed the regenerative medicine program, which included mesenchymal stem cell therapies and lung regeneration efforts. Mary earned a Ph.D. in microbiology/immunology from the University of New Hampshire followed by post-doctoral training at Emory University.


Kelly Mercier, PhD, Adjunct associate, Duke University, “The Natural History of Desmoid Tumors: What we are learning from the DTRF Patient Registry and Natural History Study.”

Dr. Kelly Mercier is a DTRF grant recipient for her work in the metabolomics of desmoid tumors. She is a lead clinical trial scientist at bioMerieux, and an adjunct associate at Duke University. She is also the DTRF Natural History Study and Patient Registry Principal Investigator. She specializes in designing and implementing novel diagnostic tools for clinical care. The mother of a desmoid tumor patient, Dr. Mercier is passionate about desmoid tumor research and is thrilled to be able to contribute her scientific knowledge to better understand and treat desmoid tumors.

Presentation here.


DeAnn Sorensen, Co-administrator, The Desmoidian.

DeAnn is a wife and a mother of three children. She is a musician who plays with a local band named RedShotPony, but she is also a survivor, an advocate, and a standard bearer for Desmoid patients everywhere. As co-administrator of the Facebook support page called ‘The Desmoidian’, DeAnn has become a key voice and advocate for thousands of patients and caregivers worldwide. She was diagnosed in 1996 but it wasn’t until 15 years later, after being diagnosed with two recurrences, that she finally met another desmoid patient online. She began to actively search social media for other patients because she knew what it felt like to be isolated for 15 years. The Desmoidian grew quickly and became a trusted online safe place for patients to not only discuss their medical issues, but life’s other daily struggles as well. DeAnn also works hand in hand with the DTRF to provide patients with information and resources to help them with their battles.


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