GOLD2023

The Desmoid Tumor Research Foundation Inc

aka DTRF   |   Woodcliff Lake, NJ   |  www.dtrf.org

Mission

The mission of The Desmoid Tumor Research Foundation is to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We collaborate with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness and support.

Ruling year info

2006

Executive Director

Lynne Hernandez

Main address

c/o CliftonLarsonAllen LLP, 50 Tice Blvd Suite 175

Woodcliff Lake, NJ 07677 USA

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EIN

61-1493017

NTEE code info

Fund Raising and/or Fund Distribution (T12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The problem is the devastating, rare disease of desmoid tumors that impacts thousands of patients of all ages throughout the world.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

DTRF Patient Meeting

DTRF hosts an Annual Patient Meeting where patients congregate from all over the world to hear about the latest treatment options and support each other.

Population(s) Served
Adults

This annual event brings together a diverse group of scientists including the brightest minds in desmoid tumor research, human genetics, drug development and related fields.

Population(s) Served
Adults

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The mission of The Desmoid Tumor Research Foundation is to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We also aim to improve the lives of patients by providing information, education, awareness and support.

We collaborate with dedicated researchers and clinicians worldwide. We aggressively fund research at world-renowned cancer research facilities. We work to improve the lives of patients through education, awareness and support.

DTRF is the only foundation in the country solely dedicated to funding desmoid tumor research and finding a cure for this rare disease. The funding of cutting-edge collaborative research continues to be our priority. 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. Mechanisms for supporting patients are described below.

DTRF-funded research has already made significant advancements in our understanding of the disease, including discovery of the tumor-initiating cell, and the impacts of various beta-catenin mutations. The following are recent programs and accomplishments:

Patient Meeting and Research Workshop
DTRF has established a very successful annual fall Patient Meeting which brings patients, physicians and researchers together for education, support and collaboration.

Website information, patient support
Our website is a clearinghouse of information on desmoid tumors and published desmoid tumor research, reaching patients, physicians and researchers around the globe.

Tissue donation, cell lines.
DTRF partnered with Pattern.org which enables our patient community, through an online consent form, to contribute excess fresh tissue from surgery to the Broad Institute of MIT and Harvard (www.broadinstitute.org). Researchers at the Broad have used the donated tissue to create scientific models called desmoid tumor cell lines. These cell lines may help scientists identify disease vulnerabilities and accelerate our understanding of desmoid tumors. Please visit Pattern.org to learn more.

Patient Reported Outcome Tool.
Since 2015, DTRF has been working to develop the first validated Patient Reported Outcome (PRO) tool in desmoid tumors. It will provide the framework for collecting data on the patient experience with a particular treatment and is intended to facilitate a new regulatory endpoint that can be used in all future clinical trials. We are pleased that the tool is now ready to be validated in clinical trials and plans are underway to use it in upcoming new desmoid tumor trials.

Clinical trial support.
For more than a decade, DTRF has advocated for and connected patients to the latest clinical trials. A high level of patient participation has filled trials quickly and brought about breakthrough results in record time for a rare disease.

Patient Registry.
DTRF partnered with the National Organization for Rare Disorders (NORD) and the U.S. Food and Drug Administration (FDA) to launch the first ever U.S. patient registry specifically for desmoid tumor patients.

Virtual Tumor Board.
With the help of our Medical Advisory Board Chair Aaron Weiss, MD, in 2017 we officially launched the DTRF virtual tumor board. Desmoid tumor experts including clinicians, radiologists, pathologists and others join from around the would, meeting quarterly via video conference. This resource offers a new source of support and collaboration for physicians of patients with difficult cases.

New mouse models.
An important need for desmoid tumor research is a mouse model that closely mimics human desmoid tumors so that we can better understand how they behave and react to various therapeutic agents.

Financials

The Desmoid Tumor Research Foundation Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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The Desmoid Tumor Research Foundation Inc

Board of directors
as of 11/22/2023
SOURCE: Self-reported by organization
Board chair

Jeanne Whiting

DTRF

Term: 2005 -

Maria Crocitto

CEO Advantage Communications, LLC

Joel Koral

Financial Representative, Northwestern Mutual Financial Network

Marlene Portnoy

DTRF Exec Dir and Co-founder

Jeanne Whiting

DTRF Pres & Co-founder

Jerrold March

DTRF

Barbara Ann Sellinger

DTRF

Rachel Sitta

Cardno International Development

Steve Whiting

Goldman Sachs

Nicole Deichert

EcoLab

Organizational demographics

SOURCE: Self-reported; last updated 11/18/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data