$25 raised by 1 donor
1% complete
$5,000 Goal
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 DESMOID TUMOR RESEARCH FOUNDATION (DTRF) EMPOWERS AND UNITES EVERYONE COMMITTED TO FINDING ANSWERS FOR THE DESMOID TUMOR COMMUNITY.
We aggressively fund desmoid tumor research, accelerate the development of improved therapies, drive collaborations among clinicians and researchers worldwide, and support patients and doctors through education. Our goal is to find a cure for each and every patient diagnosed with this rare disease.
Research Funding:
The DTRF will stop at nothing to find more treatments and ultimately, a cure for desmoid tumors. We’re the world’s leading foundation dedicated to desmoid tumor research, advocacy, awareness, and support.
We are guided by our Advisory Boards, comprised of top multidisciplinary experts from prestigious institutions around the world. Their counsel informs which research the DTRF funds to advance desmoid tumor science and drive the development of new treatment options.
DTRF-funded research has already made significant advancements in our understanding of the disease.
Education & Support:
Patients are not fighting this disease alone. Our website provides the education and support needed to navigate their journey and make important decisions about their health. Our events, including our annual DTRF Together We Will Weekend, connect the patient community with experts in the field and empower them with knowledge about the latest research and treatment options.
Our website also serves as an information hub for clinicians, researchers, and others in the medical community, supporting them in their goals of clinical improvements and advances in research.
Collaboration & Connection:
One of our most impactful priorities is facilitating collaboration and connection. As a key thought leader and advocate in the desmoid tumor landscape, we are in the unique position of seeing things from the point of view of the patient, clinician, and researcher. This allows us to identify and advance initiatives that benefit our entire community.
Throughout the year, we provide opportunities for our patients to connect with each other at our virtual and in-person events. Clinical trials and Patient-Powered Research projects connect patients directly to research.
Organization name
The Desmoid Tumor Research Foundation Inc
Causes
Medical/Scientific Research
Operating Budget
$500,000 - $999,999
Counties Served
Wise, Tarrant, Somervell, Rockwall, Parker, Palo Pinto, Navarro, Montague, Kaufman, Johnson, Hunt, Hood, Grayson, Fannin, Erath, Ellis, Denton, Dallas, Cooke, Collin
Address
9909 George Bush Drive