Founded by a Patient and a Caregiver
The DTRF’s co-founders, Jeanne Whiting and Marlene Portnoy, took on the desmoid tumor cause motivated by a personal connection to the disease. They first met in an online desmoid tumor chat room after both Jeanne, and Marlene’s husband Steve, had been diagnosed with retroperitoneal desmoid tumors.
Marlene and her husband’s journey started with surgery and radiation with serious complications. Jeanne’s journey started with surgery and recurrence of the tumor a few months later. She then underwent two and a half years of two different chemotherapies, 15 additional procedures to attempt to keep her right kidney alive, and the eventual loss of that kidney.
Determined to Solve Unanswered Questions
When first dealing with the diagnosis, both Marlene and Jeanne felt it was especially disconcerting when their doctors admitted, “We don’t really know these tumors.”
At the time, the disease had very little research and few existing treatment options. Thousands of desmoid tumor patients and family members like them struggled for hope and support from the medical community which had little to offer in the way of a cure or even research toward a cure.
The Catalyst for Sparking a Movement
In September 2005, Marlene and Jeanne co-founded the DTRF with the goal of transforming that bleak situation by facilitating and funding desmoid tumor research and providing patients with information and support.
The DTRF hosted its first annual Patient Meeting in 2007 – bringing the experts and latest research directly to patients. Soon thereafter, the annual DTRF Desmoid Tumor Int’l Research Workshop gathered researchers and clinicians from around the world. These events have grown each year since and are now known as the DTRF Together We Will Weekend.
Marlene’s and Jeanne’s work in the Foundation transformed them from victims to advocates for a cure. Today, anyone who becomes engaged in supporting the mission of the DTRF can experience the same feelings of strength, purpose and hope.
The National Organization of Rare Disorders (NORD) describes the DTRF’s progress as follows:
A Thriving Global Effort to Find a Cure
Listen to DTRF’s Scientific Director Mrinal Gounder, MD, as he discusses the history of Memorial Sloan Kettering Cancer Center and the DTRF’s Scientific Advisory Board, discuss the history of the DTRF as a patient advocacy group.
Since its inception, the DTRF has raised millions of dollars to fund cutting-edge research that’s responsible for developing treatment options, supporting clinical trials, and leading to important new desmoid tumor insights. The organization was acknowledged for their work in 2021 at the NORD Rare Impact Awards with the Abbey S. Meyers Leadership Award. Later that year, the DTRF was recognized again at the Global Genes Rare Champions of Hope Awards with the Rare Champions in Advocacy (Foundation) award.
The DTRF has forged local and international collaborations among researchers who are working together in establishing and fulfilling priorities to move the field forward. The organization’s Scientific and Medical Advisory Boards are composed of top desmoid tumor researchers and clinicians from around the world.
We’re on the path to a cure. Each person can make a difference!
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