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NATIONAL PKU ALLIANCE INC

EIN 26-2849140 ROANOKE, VA

Revenue 2025
$2,674,435
Expenses 2025
$2,032,838

Program services were 76.9% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
H25
Classification
1000
Street
2014 ELECTRIC RD PMB 212

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2025

Mission

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.

Activities or mission (Part I)

IMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE FOR PKU.

  • THE NPKUA APPROVED 5 RESEARCH GRANTS FROM THE 2025 RESEARCH GRANT CYCLE FOR A TOTAL OF $425K. THE RESEARCH PROJECTS FOCUS ON PKU ASSESSMENT TOOLS AS WELL AS PKU TREATMENTS AND THERAPIES THAT DRIVE PROGRESS TOWARD A CURE. AS OF 2025, THE NPKUA HAS AWARDED $6,419,699 IN SUPPORT OF 88 RESEARCH PROJECTS.

    Expenses $659,425 · Grants $424,958

  • COMMUNITY ENGAGEMENT CONTINUES TO BE A CORE PILLAR OF THE NATIONAL PKU ALLIANCE. THE COMMUNITY ENGAGEMENT DIRECTOR IS RESPONSIBLE FOR PLANNING AND MANAGING PROGRAMS FOR THE PKU COMMUNITY, INCLUDING A MENTORING PROGRAM, COMMUNITY CALLS, SUPPORT KITS, MATERNAL PKU PATIENT SUPPORT, ADVOCACY EFFORTS AND AN AFFILIATE PROGRAM.THE DIRECTOR SCHEDULES, MANAGES AND ATTENDS VIRTUAL CALLS WITH THE COMMUNITY ACROSS DIFFERENT PKU AGE GROUPS AND PKU CAREGIVER TYPES. 48 CALLS WERE HELD IN 2025 WITH 250 ATTENDEES.IN 2025, THE NPKUA MENTOR PROGRAM GREW TO SUPPORT OVER 45 CAREGIVERS AND INDIVIDUALS WITH PKU THROUGH PERSONALIZED ONE-ON-ONE MENTORING, WITH MENTORS CONNECTING VIRTUALLY AND IN PERSON TO SHARE EXPERIENCES AND DEVELOP SKILLS TO BETTER ASSIST THEIR MENTEES.THE NPKUA ADVOCACY COMMITTEE WORKS ALONGSIDE MEMBERS OF THE BROADER RARE DISEASE COMMUNITY TO ADVANCE EFFORTS AROUND NUTRITION, EQUITY AND OTHER PRIORITIES OF THE PKU COMMUNITY. THE COMMITTEE DEVELOPED AN ADVOCACY MEDIA TOOLKIT TO HELP COMMUNITY MEMBERS SHARE THEIR STORIES. STAFF AND ADVOCACY COMMITTEE VOLUNTEERS HAVE ALSO RESPONDED TO THE TERMINATION OF THE ACHDNC (ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND CHILDREN) BY CALLING ON CONSTITUENTS, THROUGH DATABASE-WIDE EMAIL AND SOCIAL MEDIA OUTREACH, TO SIGN-ON TO CONTACT THEIR LEGISLATORS AND SHARE THEIR STORY AND SUPPORT OF NBS. STARTED A NEWBORN SCREENING VIDEO SERIES TO BE USED IN SEPTEMBER, RECOGNIZED AS NEWBORN SCREENING AWARENESS MONTH. THE SERIES RAISES AWARENESS ABOUT THE IMPORTANCE OF NEWBORN SCREENING, AND THE CRITICAL ROLE OF NEWBORN SCREENING IN IDENTIFYING SERIOUS CONDITIONS THAT CAN LEAD TO SEVERE DISABILITY OR DEATH IF LEFT UNDIAGNOSED. IN TOTAL, NPKUA SUPPORTED 10 STATE AND FEDERAL LEGISLATIVE ADVOCACY EFFORTS.IN 2025 NPKUA PROVIDED $34,057 TO NPKUA AFFILIATES TO SUPPORT COMMUNITY EVENTS AND CAMPS IN THEIR REGIONS. DURING THE YEAR, NPKUA ALSO MET ONE-ON-ONE WITH INDIVIDUAL AFFILIATE LEADERS TO BETTER UNDERSTAND THEIR GOALS AND NEEDS. IN 2025, 206 NEWBORN AND KINDERGARTEN KITS WERE DELIVERED TO FAMILIES WELCOMING A NEW BABY WITH PKU OR SUPPORTING A NEW KINDERGARTENER WITH PKU.IN 2025, 55 PACKAGES OF DIET-APPROPRIATE FOOD WERE DELIVERED TO MATERNAL PKU PATIENTS TO BEST SUPPORT THEIR LOW-PROTEIN DIET.

    Expenses $497,406 · Grants $34,057 · Revenue $28,375

  • Withheld by Nonprofiteer: this text may name a private individual.

    Expenses $138,267

  • NPKUA HOSTED THE TRUEPKU INITIATIVE TO SHARE THE PKU EXPERIENCE WITH U.S. FOOD AND DRUG ADMINISTRATION (FDA) STAFF, PEOPLE WORKING IN LIFE SCIENCE COMPANIES, HEALTH CARE PROFESSIONALS AND ACADEMIC RESEARCHERS TO HELP SHAPE THE DEVELOPMENT OF NEW MEDICAL THERAPIES AND APPROACHES TO TREATING AND MONITORING PKU. AS PART OF THE EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT (EL-PFDD) PROGRAM, THIS MEETING TOOK PLACE VIRTUALLY ON MAY 8, 2025 IN PARTNERSHIP WITH OTHER PKU-RELATED ORGANIZATIONS AND SPONSORS. 31 MEMBERS FROM THE PKU COMMUNITY SHARED THEIR TESTIMONY. THE VOICE OF THE PATIENT REPORT SUMMARIZES THE MEETING INSIGHTS, PERSONAL STORIES AND KEY THEMES SHARED THROUGHOUT THE FIVE-HOUR MEETING, INCLUDING POWERFUL QUOTES FROM COMMUNITY MEMBERS AND PERSPECTIVES GATHERED BEFORE, DURING AND AFTER THE EVENT. BOTH THE LIVE MEETING AND REPORT CAN BE FOUND AT WWW.NPKUA.ORG/TRUEPKU/. THE MEETING HAS ATTRACTED 1,300 VIEWS ON YOUTUBE.

    Expenses $117,292 · Revenue $10,578

  • IN 2025, THE NPKUA HOSTED A REGIONAL COMMUNITY CONFERENCE ON SEPTEMBER 6 IN SAN DIEGO, CALIFORNIA. ATTENDEES INCLUDED 47 INDIVIDUALS WITH PKU, THEIR FAMILIES/CAREGIVERS, INDUSTRY PARTNERS, AND LEADING EXPERTS IN THE FIELD OF PKU RESEARCH, CLINICAL CARE, NUTRITION, AND ADVOCACY. IN TOTAL, WE WELCOMED 180 ATTENDEES. WE HELD MEANINGFUL CONVERSATIONS THROUGH EDUCATIONAL PRESENTATIONS AND ACTIVITIES DISCUSSING WHAT'S NEW IN PKU, STAYING ACTIVE WITH PKU, CLINICAL TRIALS, FOOD AND FORMULA OFFERINGS, GENE EDITING AND GENE THERAPY, TRAVELING WITH PKU AND HOME PHE MONITOR DEVELOPMENT.

    Expenses $83,918 · Revenue $4,368

  • IN THE PKU PATIENT REGISTRY, NPKUA UPGRADED THE PLATFORM, STRENGTHENING THE REGISTRY'S ABILITY TO SUPPORT PKU RESEARCH. REGISTRY PARTICIPANTS GREW TO 1,130, WITH 864 NEW SURVEY SUBMISSIONS IN 2025. THE REGISTRY SUPPORTED RECRUITMENT FOR 4 EXTERNAL RESEARCH STUDIES AND SHARED DATA IN ITS FIRST SCIENTIFIC PUBLICATION.

    Expenses $67,571

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • CATHERINE WARREN

    EXECUTIVE DIRECTOR

    Total calculated
    $210,314
    From this org
    $193,591
    From related orgs
    $0
    Other
    $16,723
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $176,591
    Bonus
    $17,000
    Other
    $0
    Deferred
    $6,800
    Nontaxable benefits
    $9,923
    Filer's total
    $210,314

  • SUSAN GRAY

    DIRECTOR OF DEVELOPMENT

    Total calculated
    $159,006
    From this org
    $147,246
    From related orgs
    $0
    Other
    $11,760
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $142,246
    Bonus
    $5,000
    Other
    $0
    Deferred
    $5,481
    Nontaxable benefits
    $6,279
    Filer's total
    $159,006

  • SARAH GALLAGHER

    DIRECTOR OF COMMUNITY ENGAGEMENT

    Total calculated
    $129,051
    From this org
    $118,056
    From related orgs
    $0
    Other
    $10,995
    Hours/week
    40

  • RHONDA CONNOLLY

    PRESIDENT

    Total calculated
    $0
    Hours/week
    10

  • ELIZABETH ASELAGE

    VP-THRU 3/25; DIR-AS OF 3/25

    Total calculated
    $0
    Hours/week
    2

  • MARK GRALEN

    DIR-THRU 3/25; VP-AS OF 3/25

    Total calculated
    $0
    Hours/week
    2

  • DAN LAZZARI

    TREASURER

    Total calculated
    $0
    Hours/week
    2

  • ALISON REYNOLDS

    SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • SUSAN BERRY

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • CHARLES BUCKLAR

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • MICHAEL FINKEL

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • LILLIAN ISABELLA

    DIRECTOR - THRU 12/25

    Total calculated
    $0
    Hours/week
    2

  • CHRISTINA LOVE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • DAVID MICKLE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • ADAM SHERMAN

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • SARA TYE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $2,674,435
    Expenses
    $2,032,838
    Contributions
    $2,481,858
    Grants paid
    $459,015
  • 2024
    Revenue
    $2,563,389
    Expenses
    $2,131,703
    Contributions
    $2,050,617
    Grants paid
    $488,881
  • 2023
    Revenue
    $1,305,823
    Expenses
    $1,874,560
    Contributions
    $1,513,280
    Grants paid
    $423,501
  • 2022
    Revenue
    $2,213,963
    Expenses
    $1,806,805
    Contributions
    $2,253,786
    Grants paid
    $471,920

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990

    Revenue
    $1,897,114
    Expenses
    $1,413,556
    Assets (EOY)
    $5,250,643

  • 2020 · 990

    Revenue
    $1,732,179
    Expenses
    $1,247,488
    Assets (EOY)
    $4,584,703

  • 2019 · 990

    Revenue
    $1,410,644
    Expenses
    $1,310,042
    Assets (EOY)
    $4,023,895

  • 2018 · 990

    Revenue
    $1,973,496
    Expenses
    $1,756,598
    Assets (EOY)
    $3,456,793

  • 2017 · 990

    Revenue
    $1,563,539
    Expenses
    $892,628
    Assets (EOY)
    $3,139,075

  • 2016 · 990

    Revenue
    $1,541,212
    Expenses
    $963,648
    Assets (EOY)
    $2,455,407

  • 2015 · 990

    Revenue
    $950,283
    Expenses
    $658,381
    Assets (EOY)
    $1,876,873

  • 2014 · 990

    Revenue
    $990,209
    Expenses
    $1,080,916
    Assets (EOY)
    $1,582,256

  • 2013 · 990

    Revenue
    $1,320,020
    Expenses
    $636,284
    Assets (EOY)
    $1,761,142

  • 2013 · 990

    Revenue
    $1,320,020
    Expenses
    $636,284
    Assets (EOY)
    $1,761,142

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Form 990-N e-Postcard, tax year 2008

Tax period
1 January 2008 to 31 December 2008
Principal officer
Judy Griffith
Mailing address
PO Box 6324Lancaster PA 17607
Website
www.npkua.org
Doing business as
NPKUA

As filed, from the IRS e-Postcard file of 19 October 2026. The IRS publishes only each organization's most recent postcard, so earlier years are not shown. A 990-N carries no financial detail. The postcard also gives the principal officer's address, which is not shown here.

Grants made

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 26 October 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.