GOLD2023

The Desmoid Tumor Research Foundation Inc

aka DTRF   |   Woodcliff Lake, NJ   |  www.dtrf.org
GuideStar Charity Check

The Desmoid Tumor Research Foundation Inc

EIN: 61-1493017


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

Show more contact info

EIN

61-1493017

Subject area info

Philanthropy

Population served info

Adults

NTEE code info

Fund Raising and/or Fund Distribution (T12)

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.

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

38.72

Average of 2685.51 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

24.2

Average of 21.2 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

9%

Average of 10% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

The Desmoid Tumor Research Foundation Inc

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

The Desmoid Tumor Research Foundation Inc

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

The Desmoid Tumor Research Foundation Inc

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of The Desmoid Tumor Research Foundation Inc’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $90,792 $128,382 $76,639 $4,983 -$91,968
As % of expenses 14.7% 21.8% 16.2% 0.7% -12.9%
Unrestricted surplus (deficit) after depreciation $90,792 $128,382 $76,639 $4,983 -$91,968
As % of expenses 14.7% 21.8% 16.2% 0.7% -12.9%
Revenue composition info
Total revenue (unrestricted & restricted) $714,396 $718,276 $548,284 $710,377 $993,749
Total revenue, % change over prior year 27.9% 0.5% -23.7% 29.6% 39.9%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.2% 0.9% 1.3% 0.0% 0.5%
Government grants 0.0% 0.0% 0.5% 10.7% 3.9%
All other grants and contributions 99.8% 96.9% 98.2% 89.1% 95.6%
Other revenue 0.0% 2.2% 0.0% 0.1% 0.0%
Expense composition info
Total expenses before depreciation $616,174 $589,894 $471,645 $705,016 $712,927
Total expenses, % change over prior year -9.8% -4.3% -20.0% 49.5% 1.1%
Personnel 24.4% 29.9% 38.5% 31.8% 39.6%
Professional fees 5.1% 7.9% 8.8% 14.1% 3.4%
Occupancy 0.0% 0.4% 0.1% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 52.2% 42.1% 43.3% 41.5% 28.1%
All other expenses 18.3% 19.8% 9.3% 12.6% 28.9%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $616,174 $589,894 $471,645 $705,016 $712,927
One month of savings $51,348 $49,158 $39,304 $58,751 $59,411
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $667,522 $639,052 $510,949 $763,767 $772,338

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 17.4 21.4 29.4 19.2 24.2
Months of cash and investments 17.9 21.4 29.4 19.2 24.2
Months of estimated liquid unrestricted net assets 17.7 21.1 28.4 19.1 16.9
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $895,426 $1,051,156 $1,155,280 $1,126,041 $1,437,224
Investments $22,600 $0 $0 $0 $0
Receivables $0 $246 $0 $0 $0
Gross land, buildings, equipment (LBE) $0 $0 $0 $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 0.0% 0.0%
Liabilities (as a % of assets) 1.3% 1.6% 4.0% 0.8% 2.6%
Unrestricted net assets $0 $0 $0 $1,119,272 $1,002,304
Temporarily restricted net assets $0 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $0 $0 $0 $0 $400,000
Total net assets $909,268 $1,037,650 $1,114,289 $1,119,272 $1,402,304

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

Executive Director

Lynne Hernandez

Lynne Hernandez initially learned about desmoids through her friend and running buddy, Sera Snyder, who was diagnosed with the disease and founded the DTRF RFA 5K & Fun Run in 2010. Lynne’s work experience spans many sectors and industries including federal government, retail, dotcom, large nonprofits, small nonprofits, and small business. While Lynne has acquired extensive skills from these experiences, they pale in comparison to the depth and satisfaction she receives through her work with the DTRF. She lives in Philadelphia, PA, which is also the home of the DTRF’s Annual Patient Meeting and RFA 5K & Fun Run.

Number of employees

Source: IRS Form 990

The Desmoid Tumor Research Foundation Inc

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
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Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

The Desmoid Tumor Research Foundation Inc

Board of directors
as of 11/22/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this 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