HHT Foundation
HHT Foundation is a public charity based in Monkton, Maryland. It supports work related to hereditary hemorrhagic telangiectasia (HHT), including research, education, public awareness, and advocacy. Its website describes a mission to find a cure while saving lives and improving well-being through research, education, and collaboration.
HHT Foundation at a glance
In short: HHT Foundation gave $2.3M across 19 grants in 2025 (avg $124K), top state California. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $2,349,201
- +29.5% vs 2024
- Grants made (2025)
- 19
- +18.8% vs 2024
- Average grant
- $123,642
- +9.0% vs 2024
- Median grant
- $126,071
- Total assets
- $8,133,180
- +56.0% vs 2024
- Primary geography
- California (22% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated October 2026.
How to apply to HHT Foundation
- Contact
Mailing address: PO Box 329, Monkton, MD 21111
Phone: (410) 357-9932
Website: https://curehht.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who HHT Foundation funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was University of California Los Angeles Extramural Fund Management ($252K). Together the top 10 received $1.5M.
Grant Size Distribution
46 grants across all recorded years
The most common grant size was in the $100–250K range: 23 grants of 46 (50%).
Geographic Focus
Where this funder awards grants
The 2025 grant dollars were distributed among recipients in multiple states. The largest reported state shares were California (22%), Massachusetts (13%), and New York (7%), followed by Georgia and Missouri (6% each). These figures describe the locations of reported recipients.
Grant Distribution by State
Share of 2025 grant dollars across all 19 itemized grants.
States
Cities
How HHT Foundation gives
Estimate from itemized grant lists in IRS Form 990 filings (2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2022 to 2025, annual grant giving ranged from $25K (2022) to $2.3M (2025). In 2025 it made 19 grants totaling $2.3M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of California Los Angeles Extramural Fund Management Los Angeles, CA | HHT-Related Research | $251,639 |
| The Broad Institute Inc Cambridge, MA | HHT-Related Research | $177,045 |
| Columbia University New York City, NY | HHT-Related Research | $169,911 |
| Augusta University Research Institute Inc Atlanta, GA | HHT-Related Research | $151,338 |
| UCSF Regents of the University of California San Francisco, CA | HHT-Related Research | $137,195 |
| Massachusetts General Hospital Boston, MA | HHT-Related Research | $135,793 |
| Washington University in St Louis St. Louis, MT | HHT-Related Research | $133,986 |
| The Board of Trustees of the Leland Stanford Junior University Redwood City, CA | HHT-Related Research | $130,000 |
| The University of North Carolina at Chapel Hill Office of Sponsored Program Chapel Hill, NC | HHT-Related Research | $127,255 |
| UT Southwestern Medical Center Dallas, TX | HHT-Related Research | $126,071 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $8,133,180 | $9,841,516 | $7,129,175 | $2,349,201 | 19 | $134,970 |
| 2024 | $5,213,609 | $6,790,311 | $5,251,461 | $1,814,402 | 16 | $134,583 |
| 2023 | $3,515,746 | $3,740,865 | $4,069,058 | $315,017 | 10 | $69,101 |
| 2022 | $3,323,287 | $2,377,085 | $1,884,387 | $24,963 | 1 | $15,516 |
| 2021 | $3,054,085 | $2,204,324 | $1,231,386 | — | — | $7,772 |
Research compiled by Grantable AI from public sources. Last updated October 2026.
Mission & Focus Areas
The organization’s stated mission is to provide information about HHT to patients, families, and physicians; support patients and families; raise funds for basic and clinical research; and sponsor HHT-related research grants. Its stated program areas include research into HHT mechanisms, novel therapeutic approaches, treatment and management, and translational research leading to multicenter trials. Other stated activities include patient support, education and conferences, public information, and advocacy for awareness, expert care, and access to clinical trials.
The website says its research funding is aimed at early-stage and pilot work, including projects needing preliminary data before a federal application is viable. It also describes resources for investigators such as registry data, biobank samples, clinical-site connections, patient engagement, and recruitment support.
2025 grants included research support to universities, medical centers, and research organizations. The Broad Institute describes its own mission as advancing biomedicine through research on disease and the dissemination of scientific knowledge. Stanford University describes its mission as combining undergraduate and graduate education with research. Cleveland Clinic describes its mission as caring for life, researching for health, and educating those who serve.
Grantmaking
In filing year 2025, the foundation reported 19 grants totaling $2,349,201. Grant amounts ranged from $25,397 to $251,639, with a median of $126,071. Listed grant purposes were HHT-related research.
Among the largest reported awards were $251,639 to the University of California Los Angeles Extramural Fund Management, $177,045 to The Broad Institute, $169,911 to Columbia University, $151,338 to Augusta University Research Institute, and $137,195 to UCSF Regents of the University of California.
The website says investigators at any career stage may be eligible to pursue research funding, including those new to HHT who work on related vascular biology. Its researcher page says to begin by sending a short summary of the study, the data or samples needed, and the stage of the work; a full protocol is not required to begin. The available information does not describe the complete process or specify application materials beyond this initial summary.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists John Dunn as president; Gabriella Choi as vice president; Marc Topaz Esq as treasurer; and Karen Silber Weissel PhD as secretary. It lists Anthony Anzell PhD, Scott Boatwright, Howard Lichtig, Marijo McCune, Mike Nolan, and Brandon Probst PhD as members.
HHT Foundation is led by Marianne Clancy, Executive Director on every filing since 2021; 3 of 16 officers listed in 2025 are compensated.
Officers on the 2025 filing
Marianne Clancy
Executive Director
On filings since 2021
40 hrs/week
$178K (2021) → $199K (2025)
John Dunn
President
Secretary → President, 2022
On filings since 2021
1 hr/week
No compensation reported
Melissa Dickey
Director & Nat'l Hht Coordinating Center
On filings since 2024
40 hrs/week
$141K (2024) → $146K (2025)
Stefanie-Nicole Schaefer
Chief Operating Officer
On filings since 2023
40 hrs/week
$103K (2023) → $114K (2025)
Anthony Anzell PhD
Member
On filings since 2021
1 hr/week
No compensation reported
Brandon Probst PhD
Member
On filings since 2021
1 hr/week
No compensation reported
Dennis Routledge
Member Emeritus
On filings since 2021
1 hr/week
No compensation reported
Dennis Sprecher MD
Member
On filings since 2021
1 hr/week
No compensation reported
Gabriella Choi
Vice President
Member → Vice President, 2025
On filings since 2021
1 hr/week
No compensation reported
Karen Silber Weissel PhD
Secretary
Member → Secretary, 2025
On filings since 2021
1 hr/week
No compensation reported
Marc Topaz Esq.
Treasurer
On filings since 2021
1 hr/week
No compensation reported
Marijo McCune
Member
On filings since 2021
1 hr/week
No compensation reported
Scott Boatwright
Member
On filings since 2021
1 hr/week
No compensation reported
Howard Lichtig
Member
On filings since 2022
1 hr/week
No compensation reported
Mike Nolan
Member
New on the 2025 filing
1 hr/week
No compensation reported
Terry Thompson Jr.
Member
New on the 2025 filing
1 hr/week
No compensation reported
Former officers (13)
- Former: Ann Trussell (2021–2024) — Member
- Former: Benjamin Holt Esq. (2021–2024) — Vice President
- Former: Jim Lapides (2021–2024) — Member
- Former: Robert Berkman (2021–2024) — Member Emeritus
- Former: Scott Olitsky MD (2021–2024) — Member
- Former: Savanah Benhart (2024) — Secretary
- Former: Sara Palmer PhD (2021–2023) — Past President
- Former: Savanah Schott (2022–2023) — Secretary
- Former: Gary Saum (2023) — Former Director
- Former: Nicole Schaefer (2022) — Chief Operating Officer
- Former: Charles Ingardia MD (2021) — Member
- Former: Gary McKee MD (2021) — Member
- Former: Harry Chapman (2021) — Member
Data from IRS Form 990 filings, 2021–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $199K, to Marianne Clancy (Executive Director). 3 officers or directors reported compensation on that filing.
Frequently asked questions about HHT Foundation
How much does HHT Foundation give each year?
HHT Foundation gave $2.3M across 19 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $1.8M across 16 grants.
What is HHT Foundation's typical grant size?
HHT Foundation's median grant in 2025 was $126,071, and its average grant was $123,642, across 19 grants on its 2025 IRS Form 990.
Where does HHT Foundation give grants?
HHT Foundation's top state is California, with 22% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Massachusetts (13%) and New York (7%).
Does HHT Foundation give general operating support?
Not in 2025: none of the 19 grants with a stated purpose on HHT Foundation's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "HHT-Related Research" (19 grants).
Who are HHT Foundation's largest grantees?
HHT Foundation's largest 2025 grantees include University of California Los Angeles Extramural Fund Management ($251,639), The Broad Institute Inc ($177,045) and Columbia University ($169,911), according to its 2025 IRS Form 990. Together they received 25% of its itemized 2025 grant dollars.
How large is HHT Foundation?
HHT Foundation reported $8.1M in total assets on its 2025 IRS Form 990. Its revenue that year was $9.8M.
What does HHT Foundation fund?
The organization’s stated mission is to provide information about HHT to patients, families, and physicians; support patients and families; raise funds for basic and clinical research; and sponsor HHT-related research grants. See mission & focus areas ↑
How do I apply for a grant from HHT Foundation?
HHT Foundation has no public application process in the sources Grantable reviewed. Check curehht.org for current guidelines, or contact the foundation directly before submitting a request.
What is HHT Foundation's EIN?
HHT Foundation's EIN (Employer Identification Number) is 22-3115041. IRS Form 990 filing data is available on this page for 2021–2025.
Data last updated October 2026. Sourced from IRS Form 990 filings. Research dossier generated October 2026.
Data update history
(5)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2022 (received by the IRS March 31, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 1, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS April 24, 2025)
- Updated Form 990 for fiscal year 2025 (received by the IRS March 24, 2026)
- IRS filings on file for fiscal years 2021–2025
Explore Open Grants
Browse active grant opportunities in HHT Foundation's focus areas in our free grants database
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Cite this profile
Grantable. (2026). HHT Foundation funder profile. GrantGraph. Retrieved October 13, 2026, from https://grantable.co/funders/hht-foundation-morg_9035a5475473448294015e35023e9355
BibTeX
@misc{grantable_223115041_2026,
author = {{Grantable}},
title = {{HHT Foundation funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/hht-foundation-morg_9035a5475473448294015e35023e9355},
note = {Accessed 2026-10-13. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from HHT 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.
HHT Foundation down — hundreds of funders to go?