The Desmoid Tumor Research Foundation
The Desmoid Tumor Research Foundation (DTRF) empowers and unites everyone committed to finding answers for the desmoid tumor community.
The Desmoid Tumor Research Foundation at a glance
In short: The Desmoid Tumor Research Foundation gave $10K across 1 grant in 2024 (avg $10K), mostly in Massachusetts. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $10,000
- -83.1% vs 2023
- Grants made (2024)
- 1
- -50.0% vs 2023
- Average grant
- $10,000
- -66.1% vs 2023
- Median grant
- $10,000
- Total assets
- $1,277,054
- +23.4% vs 2023
- Primary geography
- Massachusetts (100% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
How to apply to The Desmoid Tumor Research Foundation
Open Grants
1 open opportunity from The Desmoid Tumor Research Foundation
Who The Desmoid Tumor Research Foundation funds
How this funder distributes its grants
Top Recipients
Top recipient in 2024
The largest 2024 recipient was MIT Koch Institute for Integrative Cancer Research ($10K).
Grant Size Distribution
10 grants across all recorded years
The most common grant size was under $50K: 5 grants of 10 (50%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2024 grant dollars on its one itemized grant.
Cities
How The Desmoid Tumor Research Foundation gives
- Giving fell 92% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $10K (2024) to $233K (2020). In 2024 it made 1 grant totaling $10K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| MIT Koch Institute for Integrative Cancer Research Cambridge, MA | Planning Grant | $10,000 |
Ready to take the next step with The Desmoid Tumor Research Foundation?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $1,277,054 | $792,998 | $590,934 | $10,000 | 1 | $44,683 |
| 2023 | $1,034,489 | $333,727 | $707,649 | $59,000 | 2 | $61,045 |
| 2022 | $1,439,427 | $993,749 | $712,927 | $95,000 | 1 | $4,908 |
| 2021 | $1,128,637 | $710,377 | $705,016 | $132,891 | 2 | $70 |
| 2020 | $1,161,128 | $548,284 | $471,645 | $233,350 | 4 | $6,952 |
About The Desmoid Tumor Research Foundation
Based on IRS filings
The Desmoid Tumor Research Foundation is a public charity focused on Medical Research, based in Woodcliff Lake, NJ. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $1.3M in total assets. In 2024, it awarded 1 grant totaling $10K. Net investment income was $45K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
The Desmoid Tumor Research Foundation is led by Jeanne Whiting, President & Former Executive Director since 2024 (on filings since 2020); 2 of 12 officers listed in 2024 are compensated.
Officers on the 2024 filing
Jeanne Whiting
President & Former Executive Director
President → President & Executive Director, 2021
President & Executive Director → President & Former Executive Director, 2024
On filings since 2020
20 hrs/week
$29K (2020) → $7K (2024)
Lynne Hernandez
Executive Director
New on the 2024 filing
40 hrs/week
$95K (2024)
Marlene Portnoy
Chair
Co-Founder & Major Gifts Officer → Co-Founder & Major Gifts, 2023
Co-Founder & Major Gifts → Chair, 2024
On filings since 2020
2 hrs/week
$34K (2020) → $0 (2024)
Barara Ann Sellinger
Director
On filings since 2020
2 hrs/week
No compensation reported
Maria Crocitto
Director
On filings since 2020
2 hrs/week
No compensation reported
Nicole Zechmann Deichert
Director
On filings since 2020
2 hrs/week
No compensation reported
Rachel Sitta
Director
On filings since 2020
2 hrs/week
No compensation reported
Steve Whiting
Director
On filings since 2020
2 hrs/week
No compensation reported
Jerrold March
Director
New on the 2024 filing
2 hrs/week
No compensation reported
Tom Allen
Director
New on the 2024 filing
2 hrs/week
No compensation reported
Yating Wong
Director
New on the 2024 filing
2 hrs/week
No compensation reported
Dj Conner
Treasurer
New on the 2024 filing
4 hrs/week
No compensation reported
Former officers (3)
- Former: Jerry March (2020–2023) — Director
- Former: Joel Koral (2020–2021) — Director
- Former: Kevin Reilly (2020–2021) — Director
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $95K, to Lynne Hernandez (Executive Director). 2 officers or directors reported compensation on that filing.
Frequently asked questions about The Desmoid Tumor Research Foundation
How much does The Desmoid Tumor Research Foundation give each year?
The Desmoid Tumor Research Foundation gave $10K across 1 grant in 2024, according to its 2024 IRS Form 990. In 2023 it gave $59K across 2 grants.
How large is The Desmoid Tumor Research Foundation?
The Desmoid Tumor Research Foundation reported $1.3M in total assets on its 2024 IRS Form 990. Its revenue that year was $793K.
What is The Desmoid Tumor Research Foundation?
The Desmoid Tumor Research Foundation is a public charity focused on Medical Research, based in Woodcliff Lake, NJ. It holds $1.3M in total assets as of 2024.
Where does The Desmoid Tumor Research Foundation operate?
The Desmoid Tumor Research Foundation has awarded grants in California, Massachusetts, Pennsylvania.
What is The Desmoid Tumor Research Foundation's EIN?
The Desmoid Tumor Research Foundation's EIN (Employer Identification Number) is 61-1493017. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(5)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2021 (received by the IRS September 30, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS October 20, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 15, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 14, 2025)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in The Desmoid Tumor Research Foundation's focus areas in our free grants database
Similar Funders
Funders with grantees in common
Westra Family Charitable Trust
Manchester, MA
Assets
$496K
Grants
7
Total Given
$78K
Sperling Family Charitable Foundation
Wayland, MA
The Sperling Family Charitable Foundation supports charitable organizations, including Jewish community groups, hospitals, and biomedical research, primarily in Massachusetts. Its 2025 grants ranged from $7,200 to $1 million, with a median of $54,000. It does not accept unsolicited requests and gives only to preselected organizations.
Assets
$16.1M
Grants
10
Total Given
$2.1M
Food Allergy Research & Education Inc
McLean, VA
FARE funds food-allergy research, education, and advocacy, with research focused on prevention, diagnosis, treatment, and quality of life. Its 2025 grants had a median award of about $123,000 and went mainly to organizations in Illinois, Ohio, Pennsylvania, California, and Georgia; the profile does not state whether unsolicited requests are accepted.
Assets
$24.2M
Grants
16
Total Given
$4.3M
ASE Education and Research Foundation
Durham, NC
To provide scholarships for those interested in the field of echocardiography and healthcare and fund other charitable, educational and scientific activities related to the field of echocardiography.
Assets
$3.3M
Grants
2
Total Given
$50K
Big Hearts to Little Hearts
Farmingdale, NJ
To provide support for pediatric cardiac care
Assets
$94K
Grants
3
Total Given
$131K
The Children's Hospital of Philadelphia Foundation
Philadelphia, PA
Assets
$5.7B
Grants
5
Total Given
$181.5M
More similar funders
More Funders in New Jersey
The filing figures on this page are open data under CC BY 4.0. About GrantGraph Open
Figures come from The Desmoid Tumor Research Foundation's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
The Desmoid Tumor Research Foundation down — hundreds of funders to go?