Nonprofit · EIN 26-2849140
NATIONAL PKU ALLIANCE INC
Also known as NPKUA
Tax-exempt · ROANOKE, VA 24018
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $2,674,435 | $2,032,838 | $641,597 | $6,181,230 | $350,810 | $5,830,420 |
| December 31, 2024 | 990 | $2,563,389 | $2,131,703 | $431,686 | $5,311,012 | $356,757 | $4,954,255 |
| December 31, 2023 | 990 | $1,305,823 | $1,874,560 | -$568,737 | $4,756,738 | $160,240 | $4,596,498 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $2,481,858
- Program service revenue
- $14,946
- Investment income
- $278,337
- Net gain from sales of assets
- $62,513
- Net income from fundraising events
- -$133,202
- Other revenue
- -$100,706
Expenses
- Grants and similar amounts paid
- $459,015
- Compensation of officers, directors and key employees
- $210,314
- Other salaries and wages
- $435,682
- Salaries, compensation and benefits (total)
- $756,922
- Professional fundraising fees
- $0
- Legal fees
- $3,407
- Accounting fees
- $94,952
- Travel
- $80,261
- Depreciation
- $29,620
- Program services (functional)
- $1,563,879
- Management and general (functional)
- $215,812
- Fundraising (functional)
- $253,147
Balance sheet and other
- Total assets, start of year
- $5,311,012
- Total assets, end of year
- $6,181,230
- Total liabilities, end of year
- $350,810
- Net assets, end of year
- $5,830,420
- Land, buildings and equipment
- $106,139
- Publicly traded securities
- $4,254,573
- Net assets without donor restrictions
- $5,799,986
- Net assets with donor restrictions
- $30,434
- Gross receipts
- $3,673,900
- Employees
- 6
- Volunteers
- 150
- Year formed
- 2008
- State of legal domicile
- DE
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| CATHERINE WARREN | EXECUTIVE DIRECTOR Officer | 40 | $193,591 | $16,723 |
| SUSAN GRAY | DIRECTOR OF DEVELOPMENT Highest-paid employee | 40 | $147,246 | $11,760 |
| SARAH GALLAGHER | DIRECTOR OF COMMUNITY ENGAGEMENT Highest-paid employee | 40 | $118,056 | $10,995 |
| RHONDA CONNOLLY | PRESIDENT Trustee or director, Officer | 10 | $0 | $0 |
| ELIZABETH ASELAGE | VP-THRU 3/25; DIR-AS OF 3/25 Trustee or director, Officer | 2 | $0 | $0 |
| MARK GRALEN | DIR-THRU 3/25; VP-AS OF 3/25 Trustee or director | 2 | $0 | $0 |
| DAN LAZZARI | TREASURER Trustee or director, Officer | 2 | $0 | $0 |
| ALISON REYNOLDS | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
| SUSAN BERRY | DIRECTOR Trustee or director | 2 | $0 | $0 |
| CHARLES BUCKLAR | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MICHAEL FINKEL | DIRECTOR Trustee or director | 2 | $0 | $0 |
| LILLIAN ISABELLA | DIRECTOR - THRU 12/25 Trustee or director | 2 | $0 | $0 |
| CHRISTINA LOVE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| DAVID MICKLE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ADAM SHERMAN | DIRECTOR Trustee or director | 2 | $0 | $0 |
1 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| SARA TYE | DIRECTOR Trustee or director | 2 | $0 |
990 for the year ended December 31, 2024: 15 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SUSAN GRAY | DIRECTOR OF DEVELOPMENT Highest-paid employee | 40 | $140,372 | $2,739 |
| CATHERINE WARREN | EXECUTIVE DIRECTOR Officer | 40 | $118,346 | $1,577 |
| LISA MILBERG THRU MAY 24 | EXECUTIVE DIRECTOR Officer | 40 | $97,163 | $0 |
| RHONDA CONNOLLY | PRESIDENT Trustee or director, Officer | 10 | $0 | $0 |
| ELIZABETH ASELAGE | VICE PRESIDENT Trustee or director, Officer | 2 | $0 | $0 |
| ALISON REYNOLDS | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
| DAN LAZZARI | TREASURER Trustee or director, Officer | 2 | $0 | $0 |
| CHRISTINA LOVE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| CHARLES BUCKLER | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MARK GRALEN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MICHAEL FINKEL | DIRECTOR Trustee or director | 2 | $0 | $0 |
| SUSAN BERRY | DIRECTOR Trustee or director | 2 | $0 | $0 |
| LILLIAN ISABELLA | DIRECTOR Trustee or director | 2 | $0 | $0 |
| HEIDI MAXFIELD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ADAM SHERMAN | DIRECTOR Trustee or director | 2 | $0 | $0 |
990 for the year ended December 31, 2023: 16 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| LISA MILBERG | EXECUTIVE DIRECTOR Officer | 40 | $225,000 | $5,850 |
| SUSIE GRAY | DIRECTOR OF DEVELOPMENT Highest-paid employee | 40 | $135,776 | $5,678 |
| RHONDA CONNOLLY | PRESIDENT Trustee or director, Officer | 10 | $0 | $0 |
| ELIZABETH ASELAGE | VICE PRESIDENT Trustee or director, Officer | 5 | $0 | $0 |
| ALISON REYNOLDS | SECRETARY Trustee or director, Officer | 5 | $0 | $0 |
| ADAM SHERMAN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| DAVID MICKLE | DIRECTOR Trustee or director | 1 | $0 | $0 |
| HEIDI MAXFIELD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| LILLIAN ISABELLA | DIRECTOR Trustee or director | 1 | $0 | $0 |
| SUSAN BERRY | DIRECTOR Trustee or director | 1 | $0 | $0 |
| JERRY ELKINS | PRESIDENT (THROUGH JUNE) Trustee or director, Officer | 2 | $0 | $0 |
| BRANDON MORGAN | VP/TREASURER (THROUGH NOV) Trustee or director, Officer | 2 | $0 | $0 |
| HOMAYOON RAFATIJO | DIRECTOR (THROUGH JUNE) Trustee or director | 1 | $0 | $0 |
| JEB HABER | DIRECTOR (THROUGH JUNE) Trustee or director | 1 | $0 | $0 |
| LEO HOREY III | DIRECTOR (THROUGH NOV) Trustee or director | 1 | $0 | $0 |
| BRITTANY HOLMES | DIRECTOR (THROUGH JUNE) Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 2014 ELECTRIC RD PMB 212, ROANOKE, VA 24018-1938
- In care of
- % CATHERINE WARREN
- Mailing address (990-N for 2008)
- PO Box 6324, Lancaster PA 17607
- Principal officer (990 for 2025)
- RHONDA CONNOLLY, 2014 ELECTRIC ROAD 212, ROANOKE, VA 24018
- Principal officer (990-N for 2008)
- Judy Griffith, 963 Woodridge Blvd, Lancaster PA 17601
- Signed the 990
- RHONDA CONNOLLY, PRESIDENT
- Phone
- (855) 675-8211
- Website
- www.npkua.org
- Return prepared by
- CLIFTONLARSONALLEN LLP
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.
Program accomplishments
- 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
- THE NPKUA HELD A MULTIDISCIPLINARY SCIENCE CONFERENCE IN 2025. THIS UNIQUE CONFERENCE INCLUDED OVER 100 ACADEMIC RESEARCHERS, CLINICIANS, INDUSTRY PARTNERS IN A COLLABORATIVE FORUM TO FURTHER THE DEVELOPMENT OF TREATMENTS FOR PKU.THE KEYNOTE SPEAKER, DR. PETER MARKS FROM THE FDA, ADDRESSED NOVEL CLINICAL TRIAL DESIGNS USED IN THE APPROVAL PROCESS OF DRUGS FOR RARE DISEASES. SESSIONS AND DISCUSSIONS INCLUDED NOVEL APPROACHES TO CLINICAL TRIAL DESIGN FOR RARE DISEASES, DEVELOPING NEUROCOGNITIVE OUTCOME ASSESSMENT TOOLS TO BEST DETERMINE THE IMPACT OF NEW TREATMENTS, STRATEGIES TO OVERCOME CHALLENGES RELATED TO DIETARY DATA COLLECTION FOR CLINICAL TRIALS, AND MANAGING SUSTAINABILITY IN CLINICAL TRIALS. FOCUS ALSO INCLUDED BRINGING ADULTS BACK TO CARE AND CHALLENGES FACED WITH THE DRUG APPROVAL PROCESS.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
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 26-2849140
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2009
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H25)
- Assets (IRS master file)
- $6,181,230
- Income (IRS master file)
- $3,673,900
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $2,674,435 | $2,032,838 | $6,181,230 | IRS |
| 990 | December 2024 | $2,563,389 | $2,131,703 | $5,311,012 | XML |
| 990 | December 2023 | $1,305,823 | $1,874,560 | $4,756,738 | XML |
| 990 | December 2022 | $2,213,963 | $1,806,805 | $4,987,467 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990-N for 2008 Officer: Judy Griffith | December 31, 2008 | ≤ $50,000 receipts | – | – | e-Postcard |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 26-2849140).
Questions about NATIONAL PKU ALLIANCE INC
- What is the EIN of NATIONAL PKU ALLIANCE INC?
- The employer identification number (EIN) of NATIONAL PKU ALLIANCE INC is 26-2849140.
- Is NATIONAL PKU ALLIANCE INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2009.
- Are donations to NATIONAL PKU ALLIANCE INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NATIONAL PKU ALLIANCE INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of NATIONAL PKU ALLIANCE INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NATIONAL PKU ALLIANCE INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of NATIONAL PKU ALLIANCE INC?
- The 990 for the year ended December 31, 2025 names RHONDA CONNOLLY.
- Who are the officers and directors of NATIONAL PKU ALLIANCE INC?
- The 990 for the year ended December 31, 2025 lists 16 people; 3 received compensation from the organization, the highest $193,591 (CATHERINE WARREN, EXECUTIVE DIRECTOR).
- How much revenue does NATIONAL PKU ALLIANCE INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $2,674,435, expenses of $2,032,838 and total assets of $6,181,230 at year end.
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