About Desmoids
By taking part in Running for Answers, the first annual race in support of The Desmoid Tumor Research Foundation, you are truly bringing us one step closer to a cure.
Desmoid tumors are uncommon, with an estimated incidence in the general population of 2-4 per million people per year - representing approximately 900 new tumors annually in the United States. But these numbers are likely to be far greater. Lack of awareness and the various terminologies used to describe the tumors, have hindered accurate diagnosis as well as reporting procedures and statistics. Even when diagnosed properly, there are still far too many questions surrounding this devastating disease.
Here's an example of one of the grants that was awarded as a result of last year's fundraising for DTRF:
Benjamin Alman, MD -The Hospital for Sick Children, Toronto
Identifying novel drug therapies for desmoid tumors
One way to identify new drug therapies is to screen known drugs on cell cultures from tumors to see which drugs will kill the tumor cells. In the past Alman et al had tested 1,000 drugs on desmoid tumor cells and identified one such agent. Unfortunately, this agent is not readily available for use in North America. In this 2010 DTRF-funded study Dr. Alman plans to undertake a comprehensive screen of agents to identify drugs that specifically target cell viability in DTs. Building on previous work, Dr. Alman will focus on drugs that inhibit DT cell growth presumably by blocking Beta catenin signaling in mesenchymal cells. The agents identified will be tested for their ability to alter DT cell proliferation, Beta catenin protein level and differential effects on stem cells. Such drugs will be tested using DT cell cultures from patients and also transgenic mice that develop DTs. Identified agents can then be investigated in clinical trials. The exciting part is that the agents found to have clinical benefit will already have been FDA-approved for use in patients and can therefore be rapidly brought to patient care.
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What are desmoid tumors?
Desmoid tumors arise from connective tissue - the cells involved with the formation of muscle, fibrous and nerve tissue. Desmoid tumors, also called aggressive fibromatoses, are locally aggressive. This means that they can grow into and even destroy adjacent normal tissues, even bones. Although they do not metastasize, desmoid can infiltrate and sometimes cause destruction of adjacent vital structures and organs. The disease progression may be devastating and occasionally fatal. Desmoid tumors may be influenced by external factors, particularly hormones (whether from pregnancy, from contraceptive or hormone replacement pills). The cause of most desmoid tumors is unknown.
Who is typically affected by desmoid tumors?
People of all ages, sexes, and races are affected by desmoid tumors.
How are desmoid tumors treated?
Treatment of desmoid tumors varies and is based on the on set of symptoms, when they cause risk to adjacent structures, or when they create cosmetic concerns. Treatment options include surgery, radiation, chemotherapy and /or medical therapy.
Learn more about causes, behavior and the incident rates of desmoid tumors by visiting DTRF's About Desmoid Tumors page.
Desmoid Tumor Research Foundation
The Desmoid Tumor Research Foundation (DTRF) seeks to advance the science related to desmoid tumors, by:
- Funding research related to the diagnosis and treatment of desmoid tumors,
- Facilitating and enhancing the dialogue among members of the medical and scientific communities about research related to desmoid tumors,
- Providing informational support for desmoid tumor patients and their families and friends, and heightening awareness of desmoid tumor diagnosis and treatment.
Meet the dedicated DTRF Board of Directors.