Together We Will Empower Ourselves

DTRF Annual Patient Meeting Webinars 1, 2 & 3

Saturday, September 24

11:00am ET, 1:30pm ET & 4:00pm ET


Founded in 2007, the DTRF Annual Patient Meeting is the Foundation’s signature patient support event. Now in a virtual format for the second year, the Meeting connects the community with valuable, cutting-edge research and treatment information for desmoid tumor patients, wherever they are.

Patients and caregivers are invited to join us for THREE webinars where distinguished physicians and researchers, as well as patients, will present on key topics related to desmoid tumors. Attendees can participate in real-time Q&A. 

While all Weekend events are free, we do strongly encourage all participants to fundraise for desmoid tumor research by taking the RFA Virtual Challenge our summer-long fundraising event. When you register for the Patient Meeting Webinars, you will automatically receive your own RFA Virtual Challenge online fundraising page to claim, customize, and share. Thank you for bringing us one step closer to a cure!

Event Details

Patient Meeting Webinar #1 (via Zoom)

Saturday, Sept. 24
11:00am- 12:30pm EDT (90 minutes)

5:00pm CEST | 10:00am CDT | 9:00am MDT | 8:00am PDT | Time zone converter

Featured topics:

  1. Desmoid Tumors 101 presented by Seth Pollack, MD, Director of the Sarcoma Program, Lurie Cancer Center, Northwestern University
  2. Suggested Questions For Your Doctors: A Patient’s View presented by Bill Lundgren, Desmoid tumor care partner
  3. Tissue Donation Through presented by Barbara Van Hare, Director of Partnerships, The Rare Cancer Research Foundation
  4. Sharing Your Desmoid Journey presented by Kelly Mercier, PhD, Chair, Coordinating Center, The Desmoid Tumor Research Foundation
Patient Meeting Webinar #2 (via Zoom)

Saturday, Sept. 24
1:30- 3:15pm EDT (105 minutes)
7:30pm CEST | 12:30pm CDT | 11:30am MDT | 10:30am PDT | Time zone converter

Featured topics:

  1. The Tumor Board: A Multidisciplinary Treatment Approach presented by University of Pittsburgh Hillman Cancer Center
  2. Nirogacestat for the Treatment of Desmoid Tumors presented by Ravin Ratan, MD, Associate Professor, Sarcoma, MD Anderson Cancer Center
  3. Initial Results of RINGSIDE, a Phase 2/3 Trial of AL102 for Treatment of Desmoid Tumors presented by Mark Agulnik, MD, Professor and Section Chief of the Sarcoma Program, Department of Medical Oncology and Therapeutics Research, City of Hope
  4. Cryoablation as a Treatment for Desmoid Tumors presented by Joseph Erinjeri, MD, Interventional Radiologist & Physician Scientist, Memorial Sloan Kettering Cancer Center
Patient Meeting Webinar #3 (via Zoom)

Saturday, Sept. 24
4- 5:30pm EDT (90 minutes)
10pm CEST | 3:00pm CDT | 2:00pm MDT | 1:00pm PDT | Time zone converter

Topics with a focus on FAP and Desmoid Tumors:

  1. Building Resilience: Psychosocial Issues in Desmoid Disease presented by Karen Hurley, PhD, Clinical Psychologist, Center for Adult Behavioral Health, Neurological Institute, Cleveland Clinic
  2. Medical decision making for systemic treatment of FAP-associated desmoid tumors presented by Dale R. Shepard, MD, PhD, FACP, Director, Phase I and Sarcoma Programs, Cleveland Clinic Taussig Cancer Institute
  3. Surgical considerations for desmoid disease in familial adenomatous polyposis presented by Joshua Sommovilla, MD, Associate Staff & Colorectal Surgeon, Cleveland Clinic

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