National PKU Alliance Inc logo

National PKU Alliance Inc

Public charity · Grantmaker Roanoke, VA EIN: 26-2849140 Website

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.

Key facts about National PKU Alliance Inc

In short: National PKU Alliance Inc gave $404K across 8 grants in 2025 (avg $51K), top state Oregon. Source: 2025 IRS Form 990.

EIN
26-2849140
Latest 990 filing
Form 990, 2025
Annual giving (2025)
$404,367
Grants made (2025)
8
Average grant
$50,546
Median grant
$30,049
Total assets
$6,181,230
Primary geography
Oregon (42% 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

$6.2M

+16.4% YoY

Annual Giving

$404K

+56.9% YoY

Grant Count

8

+300.0% YoY

Avg Grant Size

$51K

-60.8% YoY

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.

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

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

8states

Share of 2025 grant dollars across all 8 itemized grants.

Cities

PortlandPasadenaAtlantaBostonLa JollaLos AltosLos AngelesPittsburghColumbiaPalatinePhiladelphiaSt. Louis

Giving Over Time

Total grant dollars and number of grants per year

$0$200K$400K$600K4 grants2020 5 grants2021 3 grants2022 4 grants2023 2 grants2024 8 grants2025

From 2020 to 2025, annual grant giving ranged from $258K (2024) to $442K (2022). In 2025 it made 8 grants totaling $404K.

Grant Insights

How this funder distributes its grants

Top Recipients

Top 8 recipients in 2025

Oregon Health & Science: $169KOregon Health & Science$169KUniversity of California San Diego: $80KUniversity of California SanDiego$80KBoston Children's Hospital: $71KBoston Children's Hospital$71KEmory University School of Medicine: $50KEmory University School ofMedicine$50KMaryland Alliance of PKU Families Inc: $10KMaryland Alliance of PKUFamilies Inc$10KPKU Organization of Illinois: $9KPKU Organization of Illinois$9KCalifornia Coalition for PKU and Allied Disorders: $8KCalifornia Coalition for PKUand Allied Disorders$8KGeorgia PKU Connect Inc: $8KGeorgia PKU Connect Inc$8K

The largest 2025 recipient was Oregon Health & Science ($169K). Together the top 8 received $404K.

Grant Size Distribution

22 grants across all recorded years

10<$50K5$50–100K6$100–250K1$250–500K$500K–1M$1–5M$5M+

The most common grant size was under $50K: 10 grants of 22 (45%).

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
Oregon Health & Science Portland, ORPKU Research$169,344
University of California San Diego La Jolla, CAPKU Research$80,000
Boston Children's Hospital Boston, MAPKU Research$71,394
Emory University School of Medicine Atlanta, GAPKU Research$50,000
Maryland Alliance of PKU Families Inc Pasadena, MDPKU Research$10,098
PKU Organization of Illinois Palatine, ILPKU Research$8,531
California Coalition for PKU and Allied Disorders Los Altos, CAPKU Research$7,500
Georgia PKU Connect Inc Atlanta, GAPKU Research$7,500

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$1M$2M$3M2020 2021 2022 2023 2024 2025
Metric202520242023
Total Assets$6,181,230$5,311,012$4,756,738
Revenue$2,674,435$2,563,389$1,305,823
Expenses$2,032,838$2,131,703$1,874,560
Net Investment Income$278,337$439,923$143,457

Data update history

When this profile's IRS filing data changed on Grantable

  1. Updated Form 990 for fiscal year 2020 (received by the IRS March 31, 2021)
  2. Updated Form 990 for fiscal year 2021 (received by the IRS April 6, 2022)
  3. Updated Form 990 for fiscal year 2022 (received by the IRS April 27, 2023)
  4. Updated Form 990 for fiscal year 2023 (received by the IRS April 19, 2024)
  5. Updated Form 990 for fiscal year 2024 (received by the IRS April 18, 2025)
  6. Added Form 990 for fiscal year 2025 (received by the IRS May 11, 2026)
  7. IRS filings on file for fiscal years 2020–2024

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

Catherine Warren — Executive Director: $194KCatherine WarrenExecutive Director$194KSusan Gray — Director of Development: $147KSusan GrayDirector of Development$147KSarah Gallagher — Director of Community Engagement: $118KSarah GallagherDirector of Community Engagement$118K

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.

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