The Desmoid Tumor Research Foundation (DTRF)* was founded in September, 2005, by Jeanne Whiting and Marlene Portnoy. The Desmoid Tumor Research Foundation (DTRF)* was founded in September, 2005, by Jeanne Whiting and Marlene Portnoy. Shortly thereafter, Charisse Litchman, MD, joined the executive committee and assumed the position of Chair of the Scientific Advisory Board. Each has a personal connection to this rare disease, either in themselves or a loved one, which motivates them to aggressively accelerate the search for a cure.

Through personal experience, they became acutely aware that there are few desmoid tumor treatments that are only sporadically effective. Desmoid tumors had been largely ignored in the cancer research field and there was a lack of information available to patients and their families about the disease. They were determined to change this situation by combining their backgrounds in medicine, law, fundraising and marketing. They have a deep sense of urgency in this cause and press forward to fund cutting-edge research that will develop new effective therapies for desmoid tumors, leading to the ultimate goal -- a cure!

Our Mission

The Desmoid Tumor Research Foundation*:

• is the only organization in the world dedicated to funding desmoid tumor research and finding a cure for this rare and devastating disease
• has  jumpstarted desmoid tumor research and has already awarded seven research grants, funding significant multi-year desmoid tumor research projects at four major cancer research institutions: Stanford University, MD Anderson Cancer Center, Huntsman Cancer Center and The Hospital for Sick Children
• has compiled a Scientific Advisory Board of the world's top desmoid tumor experts and is facilitating the collaboration of researchers in establishing research priorities
• has become a facilitator of patient donation of their desmoid tumor tissues to research hospitals, thus preserving this rare tissue that is desperately needed to move research forward
• has established an annual desmoid tumor symposium bringing patients, physicians and researchers together from around the world for education, support and collaboration
• DTRF.org, has become a clearinghouse of information on desmoid tumors and research, reaching physicians, researchers and patients around the world

**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. We are 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 diseases. t allowed by law.