National PKU Alliance Inc
Our mission is to improve the lives of individuals with pku, pursue a cure by expanding research and provide education and support to individuals living with pku and their caregivers.
National PKU Alliance Inc at a glance
In short: National PKU Alliance Inc gave $404K across 8 grants in 2025 (avg $51K), top state Oregon. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $404,367
- +56.9% vs 2024
- Grants made (2025)
- 8
- +300.0% vs 2024
- Average grant
- $50,546
- -60.8% vs 2024
- Median grant
- $30,049
- Total assets
- $6,181,230
- +16.4% vs 2024
- Primary geography
- Oregon (42% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who National PKU Alliance Inc funds
How this funder distributes its grants
Top Recipients
Top 8 recipients in 2025
The largest 2025 recipient was Oregon Health & Science ($169K). Together the top 8 received $404K.
Grant Size Distribution
22 grants across all recorded years
The most common grant size was under $50K: 10 grants of 22 (45%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 8 itemized grants.
Cities
How National PKU Alliance Inc gives
- Giving held roughly steady from 2022 to 2025 (−9%). 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 2025, annual grant giving ranged from $258K (2024) to $442K (2022). In 2025 it made 8 grants totaling $404K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Oregon Health & Science Portland, OR | PKU Research | $169,344 |
| University of California San Diego La Jolla, CA | PKU Research | $80,000 |
| Boston Children's Hospital Boston, MA | PKU Research | $71,394 |
| Emory University School of Medicine Atlanta, GA | PKU Research | $50,000 |
| Maryland Alliance of PKU Families Inc Pasadena, MD | PKU Research | $10,098 |
| PKU Organization of Illinois Palatine, IL | PKU Research | $8,531 |
| California Coalition for PKU and Allied Disorders Los Altos, CA | PKU Research | $7,500 |
| Georgia PKU Connect Inc Atlanta, GA | PKU Research | $7,500 |
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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 | $6,181,230 | $2,674,435 | $2,032,838 | $404,367 | 8 | $278,337 |
| 2024 | $5,311,012 | $2,563,389 | $2,131,703 | $257,802 | 2 | $439,923 |
| 2023 | $4,756,738 | $1,305,823 | $1,874,560 | $415,304 | 4 | $143,457 |
| 2022 | $4,987,467 | $2,213,963 | $1,806,805 | $442,468 | 3 | $32,422 |
| 2021 | $5,250,643 | $1,897,114 | $1,413,556 | $394,815 | 5 | $202,026 |
| 2020 | $4,584,703 | $1,732,179 | $1,247,488 | $423,225 | 4 | $19,092 |
About National PKU Alliance Inc
Based on IRS filings
National PKU Alliance Inc is a public charity focused on Medical Research, based in Roanoke, VA. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $6.2M in total assets. In 2025, it awarded 8 grants totaling $404K. Net investment income was $278K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
National PKU Alliance Inc is led by Catherine Warren, Executive Director on every filing since 2024; 3 of 16 officers listed in 2025 are compensated.
Officers on the 2025 filing
Catherine Warren
Executive Director
On filings since 2024
40 hrs/week
$118K (2024) → $194K (2025)
Rhonda Connolly
President
Secretary → President, 2023
On filings since 2020
10 hrs/week
No compensation reported
Susan Gray
Director of Development
On filings since 2024
40 hrs/week
$140K (2024) → $147K (2025)
Sarah Gallagher
Director of Community Engagement
New on the 2025 filing
40 hrs/week
$118K (2025)
Lillian Isabella
Director -
Director → Director -, 2025
On filings since 2020
2 hrs/week
No compensation reported
Susan Berry
Director
On filings since 2020
2 hrs/week
No compensation reported
David Mickle
Director
On filings since 2021
2 hrs/week
No compensation reported
Adam Sherman
Director
On filings since 2023
2 hrs/week
No compensation reported
Charles Bucklar
Director
On filings since 2024
2 hrs/week
No compensation reported
Christina Love
Director
On filings since 2024
2 hrs/week
No compensation reported
Michael Finkel
Director
On filings since 2024
2 hrs/week
No compensation reported
Sara Tye
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Elizabeth Aselage
Vp-
Director → Vice President, 2023
Vice President → Vp-, 2025
On filings since 2021
2 hrs/week
No compensation reported
Alison Reynolds
Secretary
Director → Secretary, 2023
On filings since 2022
2 hrs/week
No compensation reported
Dan Lazzari
Treasurer
On filings since 2024
2 hrs/week
No compensation reported
Mark Gralen
Dir-
Director → Dir-, 2025
On filings since 2024
2 hrs/week
No compensation reported
Former officers (20)
- Former: Heidi Maxfield (2022–2024) — Director
- Former: Lisa Milberg (2022–2024) — Executive Director · Filing note: Thru May 24
- Former: Brittany Holmes (2020–2023) — Director
- Former: Jerry Elkins (2020–2023) — President
- Former: Brandon Morgan (2022–2023) — Vice President & Treasurer
- Former: Jeb Haber (2022–2023) — Director
- Former: Homayoon Rafatijo (2023) — Director
- Former: Leo Horey III (2023) — Director
- Former: Susie Gray (2023) — Director of Development
- Former: Heather Bomar (2020–2022) — Director
- Former: J. Glenn Haber (2020–2022) — Treasurer
- Former: Richard Michaux (2021–2022) — Vice President
- Former: Christine Schlegel (2022) — Executive Director
- Former: Amy Oliver (2020–2021) — President
- Former: Anne Pariser (2020–2021) — Director
- Former: Christine Brown (2020–2021) — Executive Director
- Former: Sharon Ernst (2020–2021) — Director
- Former: Dick Michaux (2020) — Vice President
- Former: Les Clark (2020) — Member at Large
- Former: Stephen Aselage (2020) — Director
Data from IRS Form 990 filings, 2020–2025. "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 $194K, to Catherine Warren (Executive Director). 3 officers or directors reported compensation on that filing.
Frequently asked questions about National PKU Alliance Inc
How much does National PKU Alliance Inc give each year?
National PKU Alliance Inc gave $404K across 8 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $258K across 2 grants.
What is National PKU Alliance Inc's typical grant size?
National PKU Alliance Inc's median grant in 2025 was $30,049, and its average grant was $50,546, across 8 grants on its 2025 IRS Form 990.
Where does National PKU Alliance Inc give grants?
National PKU Alliance Inc's top state is Oregon, with 42% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were California (22%) and Massachusetts (18%). The most frequent recipient cities were Atlanta, GA (2 grants).
Does National PKU Alliance Inc give general operating support?
Not in 2025: none of the 8 grants with a stated purpose on National PKU Alliance Inc's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "PKU Research" (8 grants).
Who are National PKU Alliance Inc's largest grantees?
National PKU Alliance Inc's largest 2025 grantees include Oregon Health & Science ($169,344), University of California San Diego ($80,000) and Boston Children's Hospital ($71,394), according to its 2025 IRS Form 990. Together they received 79% of its itemized 2025 grant dollars.
How large is National PKU Alliance Inc?
National PKU Alliance Inc reported $6.2M in total assets on its 2025 IRS Form 990. Its revenue that year was $2.7M.
What is National PKU Alliance Inc?
National PKU Alliance Inc is a public charity focused on Medical Research, based in Roanoke, VA. It holds $6.2M in total assets as of 2025.
What is National PKU Alliance Inc's EIN?
National PKU Alliance Inc's EIN (Employer Identification Number) is 26-2849140. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS March 31, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS April 6, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS April 27, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS April 19, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS April 18, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS May 11, 2026)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work National PKU Alliance Inc funds
Medical Research Open opportunities, soonest deadline first.
- Dr. Richard A. Falls Virginia Lions Eye Institute Research Grant Up to $40,000 (yearly total budget) · Due October 25, 2026
- NSF Graduate Research Fellowship Program (GRFP) $32,000 annually plus $12,000 cost of education allowance · Due October 27, 2026
- Social, Political and Economic Inequality Grants Due October 28, 2026
Explore Open Grants
Browse active grant opportunities in National PKU Alliance Inc's focus areas in our free grants database
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