About Us - Desmoid Tumor Research Foundation

About Us

Our Mission

The mission of The Desmoid Tumor Research Foundation is to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We collaborate with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness and support. DTRF’s founders have a deep sense of urgency in this cause motivated by a personal connection to the disease.

DTRF is the only foundation ​in the world solely dedicated to funding desmoid tumor research and finding a cure for this rare disease. We fund research projects at the world’s top sarcoma cancer research centers in both basic science and clinical trials. DTRF-funded research seeks to determine what goes wrong in cells to generate these tumors, what medical and surgical options work best, and what existing drugs or potential new drugs could provide effective treatments. DTRF facilitates collaboration between researchers from different institutions to expedite the development of a cure. DTRF-funded research has already made significant advancements in our understanding of the disease. Discoveries made through desmoid tumor research can also potentially be applied to many other kinds of cancers such as breast, colon, ovarian and other sarcoma cancers.

DTRF’s partnership with Pattern.org and the Broad Institute is part of a larger effort to establish and genetically characterize cell lines, which are cells that keep dividing and growing over time, under certain conditions in a laboratory. In developing these cell lines, the Broad Institute is trying to enable the scientific community to improve our understanding of cancer, as well as desmoid tumors.

DTRF has established a very successful annual fall Patient Meeting which brings patients, physicians and researchers together for education, support and collaboration. Our 2014 weekend in Philadelphia included the first International Desmoid Tumor Research Workshop. This event brings together a diverse group of scientists including the brightest minds in desmoid tumor research, human genetics, drug development and related fields. The Workshop facilitates an enthusiastic and collegial atmosphere as researchers across disciplines and institutions collaborate around the shared goal of improving treatments for desmoid tumor patients, establishing research priorities and moving the field forward toward a cure. In addition, our website is a clearinghouse of information on desmoid tumors and published desmoid tumor research, reaching patients, physicians and researchers around the globe.

Patients are no longer fighting this disease alone. Our website provides information and helps direct them to other sources for information and support. Our annual Patient Meeting provides a supportive environment for patient interaction and informative lectures by clinicians and researchers. Most of all, we seek to support patients by giving them hope through funding research for a cure. Our fundraising events around the country promote awareness and give patients and their families and friends a healing way to make a difference as proactive advocates for a cure. We know that our goal of a cure is within reach… and we will get there together.