The National Fragile X Foundation
The National Fragile X Foundation serves the entire fragile x community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.
Key facts about The National Fragile X Foundation
In short: The National Fragile X Foundation gave $136K across 4 grants in 2025 (avg $34K), top state Ohio. Source: 2025 IRS Form 990.
- EIN
- 84-0960471
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $135,959
- Grants made (2025)
- 4
- Average grant
- $33,990
- Median grant
- $29,156
- Total assets
- $4,034,589
- Primary geography
- Ohio (40% of itemized 2025 grant dollars)
Data from IRS Form 990, 2025; updated September 2026.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$4.0M
+5.0% YoY
Annual Giving
$136K
+18.9% YoY
Grant Count
4
+0.0% YoY
Avg Grant Size
$34K
+18.9% YoY
How The National Fragile X Foundation gives
- Giving held roughly steady from 2022 to 2025 (+13%). Method
From the foundation's IRS Form 990 filings. Methodology.
About The National Fragile X Foundation
Based on IRS filings
The National Fragile X Foundation is a public charity focused on Medical Research, based in Washington, DC. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $4.0M in total assets. In 2025, it awarded 4 grants totaling $136K. Net investment income was $77K.
Focus Areas
Open Grants
4 open opportunities from The National Fragile X Foundation
International Fragile X Premutation Registry Recruitment Support
The National Fragile X Foundation
Amount
Varies
Deadline
Rolling / Open
NFXF Junior Investigator Award
The National Fragile X Foundation
Amount
Varies
Deadline
Rolling / Open
Randi J. Hagerman Summer Scholar Award
The National Fragile X Foundation
Amount
Varies
Deadline
Rolling / Open
Ready to take the next step with The National Fragile X Foundation?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of all 4 itemized 2025 grant dollars.
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2025, annual grant giving ranged from $3K (2021) to $136K (2025). In 2025 it made 4 grants totaling $136K.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 4 recipients in 2025
The largest 2025 recipient was Cincinnati Children's Hospital Medical Center ($54K). Together the top 4 received $136K.
Grant Size Distribution
16 grants across all recorded years
The most common grant size was under $50K: 15 grants of 16 (94%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Cincinnati Children's Hospital Medical Center Cincinnati, OH | Sub Award | $54,054 |
| University of Colorado Denver Aurora, CO | Sub Award | $30,990 |
| Regents of the University of Minnesota Minneapolis, MN | Sub Award | $27,321 |
| University of California Davis Davis, CA | Sub Award | $23,594 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $4,034,589 | $3,843,116 | $3,572,020 |
| Revenue | $2,291,142 | $2,134,157 | $1,802,073 |
| Expenses | $2,187,406 | $2,124,722 | $1,800,882 |
| Net Investment Income | $76,533 | $97,561 | $47,771 |
Data update history
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS April 22, 2020)
- Updated Form 990 for fiscal year 2021 (received by the IRS June 14, 2022)
- Added Form 990 for fiscal year 2025 (received by the IRS July 10, 2026)
- IRS filings on file for fiscal years 2020–2024
Leadership & Key People
Officers and directors from IRS filings
The National Fragile X Foundation is led by Hilary Rosselot, Executive Director on every filing since 2022; 2 of 17 officers listed in 2025 are compensated.
Officers on the 2025 filing
Hilary Rosselot
Executive Director
On filings since 2022
40 hrs/week
$129K (2022) → $158K (2025)
Kristin Bogart
Senior Director, Development & Communications
On filings since 2022
40 hrs/week
$107K (2022) → $109K (2025)
Reymundo Lazano
Board Member
Director → Board Member, 2022
On filings since 2019
No compensation reported
Laurie Bridges
Board Member
Board Member → Board President, 2024
Board President → Board Member, 2025
On filings since 2020
No compensation reported
Kara Frech
Board Vice President
Director → Board Member, 2022
Board Member → Board Vice President, 2023
On filings since 2021
No compensation reported
Denny Haugen
Board Member
Board Member → Board Secretary, 2023
Board Secretary → Board Member, 2024
On filings since 2022
No compensation reported
David Tillman
Board Member
On filings since 2023
No compensation reported
Peggy Flanigan
Board Secretary
Board Member → Board Secretary, 2025
On filings since 2023
No compensation reported
Susan Howell
Board Member
On filings since 2023
No compensation reported
Tamaro Hudson
Board Member
On filings since 2023
No compensation reported
Jacquelyn Colemna
Board Member
New on the 2025 filing
No compensation reported
Jill Dolan
Board Member
New on the 2025 filing
No compensation reported
Jordan Crody
Board Treasurer
New on the 2025 filing
No compensation reported
Kerry Stedke
Board Member
New on the 2025 filing
No compensation reported
Michele Kaplan
Board Member
New on the 2025 filing
No compensation reported
Rebecca Shaffer
Board Member
New on the 2025 filing
No compensation reported
Vicki Wilkens
Board Member
New on the 2025 filing
No compensation reported
Former officers (21)
- Former: Abby Gaunt (2019–2024) — Board Secretary
- Former: Shari Silver (2021–2024) — Board Member
- Former: Rebecca Schaeffer (2022–2024) — Board Member
- Former: Victoria Wilkins (2022–2024) — Board Member
- Former: Jacquelyn Coleman (2023–2024) — Board Member
- Former: Jordan Crotty (2024) — Board Treasurer
- Former: Joe Garera (2019–2023) — Board Member
- Former: Anthony Fasciano (2021–2023) — Board Treasurer
- Former: Jed Seifert (2021–2023) — Board Member
- Former: Emily Mack (2019–2022) — Board President
- Former: Evan Davis (2019–2022) — Board Vice President
- Former: Linda Sorenson (2019–2022) — Executive Director
- Former: Rajat Sarup (2019–2022) — Board Treasurer
- Former: Charles Mitchell (2019–2021) — Director
- Former: Emily Borg (2019–2021) — Director
- Former: Howard Pollock (2019–2021) — Director
- Former: Larry Krantz (2019–2021) — Director
- Former: Stephanie Sherman (2019–2021) — Director
- Former: Brenda Finucane (2019–2020) — Director
- Former: Jay Souder (2019–2020) — Past President
- Former: Paula Fasciano (2019–2020) — Director
Data from IRS Form 990 filings, 2019–2025. "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 $158K, to Hilary Rosselot (Executive Director). 2 officers or directors reported compensation on that filing.
Frequently asked questions about The National Fragile X Foundation
How much does The National Fragile X Foundation give each year?
The National Fragile X Foundation gave $136K across 4 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $114K across 4 grants.
What is The National Fragile X Foundation's typical grant size?
The National Fragile X Foundation's median grant in 2025 was $29,156, and its average grant was $33,990, across 4 grants on its 2025 IRS Form 990.
Where does The National Fragile X Foundation give grants?
The National Fragile X Foundation's top state is Ohio, with 40% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Colorado (23%) and Minnesota (20%).
Does The National Fragile X Foundation give general operating support?
Not in 2025: none of the 4 grants with a stated purpose on The National Fragile X Foundation's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Sub Award" (4 grants).
How large is The National Fragile X Foundation?
The National Fragile X Foundation reported $4.0M in total assets on its 2025 IRS Form 990. Its revenue that year was $2.3M.
What is The National Fragile X Foundation?
The National Fragile X Foundation is a public charity focused on Medical Research, based in Washington, DC. It holds $4.0M in total assets as of 2025.
What is The National Fragile X Foundation's EIN?
The National Fragile X Foundation's EIN (Employer Identification Number) is 84-0960471. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Here's the math on researching The National Fragile X Foundation by hand.
Explore Open Grants
Browse active grant opportunities in The National Fragile X Foundation's focus areas in our free grants database
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