About the Foundation

Jeanne Whiting, President and Marlene Portnoy


Jeanne Whiting, President and Marlene Portnoy, Executive Director

Our Mission

Founded in 2005, The Desmoid Tumor Research Foundation (DTRF) is dedicated to funding research for a cure for desmoid tumors.

The founders have a deep sense of urgency in this cause motivated by a personal connection to the disease. We press forward to fund cutting-edge research that will develop new effective therapies for desmoid tumors, leading to the ultimate goal -- a cure!

Research Funding

DTRF is the only foundation in the country 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.

Tissue Donation

DTRF facilitates much-needed patient donation of tissue samples to research hospitals.

Education and Collaboration

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.

In 2014 we established the International Desmoid Tumor Research Workshop. This event brought together a diverse group of scientists including the brightest minds in desmoid tumor research, human genetics, drug development and related fields.

The workshop facilitated 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.

Patient Support

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.


**The Desmoid Tumor Research Foundation, Inc. is a Connecticut non-stock, nonprofit corporation which has been determined by the IRS to be a tax-exempt Section 501(c)(3) organization. Donations are deductible to the extent allowed by law.

 

nord logo about  DTRF is a member of National Organization for Rare Disorders (NORD), a unique federation of individuals and organizations working together to build a better world for people affected by rare disease

 

livestrong logo about We are a member of LIVESTRONG Young Adult Alliance (LiveStrong AYA), a coalition of organizations dedicated to improving survival rates and quality of life for young adults with cancer.

 

rarediseasedaypartner logo about DTRF joins the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day in February annually. The purpose is to focus attention on the needs of patients and families affected by rare diseases.

 

sos desmoide180 DTRF seeks to facilitate international collaboration in finding a cure for desmoid tumors, and cooperates with international organizations such as SOS Desmoide in France.