On Saturday, April 28th, DTRF hosted its first Western Regional Patient Meeting in Salt Lake City, Utah! More than 45 desmoid tumor patients and caregivers convened for a day of connecting and learning. The goal of DTRF’s patient meetings is to provide education and hope by presenting the latest research and treatment options, and by facilitating connections among patients, caregivers and doctors.
Speaker presentations covered an overview of the disease, High Intensity Frequency Ultrasound (or HIFU) as a viable treatment option, Tegavivint’s upcoming phase I trial and Nigrogacestat’s phase II trial success and an update on its upcoming phase III trial. Also, DTRF Registry Principal Investigator Dr. Kelly Mercier highlighted the first set of data gleaned from the DTRF Patient Registry and encouraged additional participation.
Event presentations that have been approved for public posting can be found here: https://dtrf.org/westcoastpatientmeeting/
Yating W., mother of a vibrant 19 month-old desmoid tumor patient, spoke about her son’s diagnosis and her journey as a caregiver. She talked about her commitment to supporting the Foundation via fundraising, and encouraged attendees to do what they can and “just try.” Attendees enjoyed entertainment by desmoid patient DeAnn Sorenson, joined by her husband Tom and daughter Rylee, who performed 3 uplifting songs for the crowd. We left rejuvenated, better informed and encouraged for the road ahead.
Special thanks go to the many people who helped make this event happen: the event day volunteers who showed up early to meet n’ greet attendees, the participants who fundraised to attend, and DeAnn Sorenson and Sherrie Gould (administrators of the Desmoidian Facebook page) who spearheaded and promoted the meeting within the community.
View the official 2018 Patient Meeting photos provided by Farrell Lafferty.