Skip to content
Nonprofiteer
← PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS ADVOCACY AND RESOURCE

Form 990 for tax year 2025

Filed by PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS ADVOCACY AND RESOURCE.

Totals

Total revenue
$696,612
Total expenses
$529,691
Contributions and grants received
$712,530
Grants paid
$96,512
Program service revenue
$0
Investment income
$341
Other revenue
-$16,259
Total assets, end of year
$458,434
Total liabilities, end of year
$109,274
Net assets or fund balances, end of year
$349,160
Program services expenses (Part IX)
$384,544
Management and general expenses
$96,106
Fundraising expenses
$49,041
Program service expenses (Part III)
$384,544

Program services were 72.6% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $32,678

  • 1f · All other contributions, gifts and grants

    $679,852

  • 1g · Noncash contributions included above

    $14,550

  • 3 · Investment income

    total $341 · excluded $341

  • 8a · Fundraising events: gross income

    $7,181

  • 8a · Fundraising events: contributions included on line 1c

    $32,678

  • 8b · Fundraising events: direct expenses

    $23,440

  • 8c · Net income from fundraising events

    total -$16,259 · excluded -$16,259

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $81,748 · program services $81,748

  • 2 · Grants to domestic individuals

    total $8,952 · program services $8,952

  • 3 · Grants to foreign organizations and individuals

    total $5,812 · program services $5,812

  • 5 · Compensation of officers, directors and key employees

    total $76,816 · program services $37,762 · management and general $28,757 · fundraising $10,297

  • 7 · Other salaries and wages

    total $88,195 · program services $51,925 · management and general $23,483 · fundraising $12,787

  • 9 · Other employee benefits

    total $5,782 · management and general $5,782

  • 10 · Payroll taxes

    total $13,552 · program services $7,150 · management and general $4,511 · fundraising $1,891

  • 11b · Fees: legal

    total $1,460 · program services $800 · management and general $500 · fundraising $160

  • 11c · Fees: accounting

    total $9,880 · management and general $9,880

  • 11g · Fees: other

    total $163,228 · program services $140,080 · management and general $2,235 · fundraising $20,913

  • 12 · Advertising and promotion

    total $1,610 · program services $859 · fundraising $751

  • 13 · Office expenses

    total $10,163 · program services $8,876 · management and general $1,098 · fundraising $189

  • 14 · Information technology

    total $23,202 · program services $2,838 · management and general $18,700 · fundraising $1,664

  • 19 · Conferences, conventions and meetings

    total $38,065 · program services $37,742 · management and general -$66 · fundraising $389

  • 23 · Insurance

    total $1,226 · management and general $1,226

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $133,525 · end of year $354,364

  • 3 · Pledges and grants receivable

    beginning of year $79,253 · end of year $104,070

  • 17 · Accounts payable and accrued expenses

    beginning of year $30,539 · end of year $109,274

  • 27 · Net assets without donor restrictions

    beginning of year $136,914 · end of year $297,241

  • 28 · Net assets with donor restrictions

    beginning of year $45,325 · end of year $51,919

Mission and programs · 2025

Mission

To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC.

  • In 2025 PFIC Network provided program services in the areas of peer support, education, outreach, advocacy and research to further our mission of improving the lives of patients and families affected by PFIC worldwide. We continued to offer care packages, conference travel scholarships and direct financial assistance to patients and families in more than 10 countries. In June, we completed IMPACT (Identifying research targets by Merging Patient And Clinician Treatment information), a two-year project which produced a research roadmap of patient-identified priorities and helped us build an educated and motivated body of patients and families interested in pursuing further involvement in research. This project was funded by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455). Additionally, we were awarded a second PCORI Engagement Award (EACB-42398) to build on the work started in IMPACT by establishing a patient-centered research consortium. In July, we co-hosted the first-ever Cholestatic Liver Disease Summit alongside two other cholestatic liver disease organizations, Biliary Atrestia Research and Education and Alagille Syndrome Alliance, in lieu of our annual PFIC Family and Scientific Conference. The conference hosted over 300 attendees over 3 days in Aurora, Colorado. Collaborating with related disease groups allowed us to expand our network of clinicians and researchers, provide more opportunities for peer connection through the larger numbers of patients and families in attendance, and open the door for multi-organization collaboration in cholestatic liver disease research. Other program highlights include co-authoring and publishing the first manuscript sharing patient-reported outcomes from our patient registry and directly funding a research study aimed at identifying genetic causes of cholestasis in undiagnosed children. In addition to support and research accomplishments, PFIC Network put significant effort into enhancing the user interface for our website, our main platform for delivering education materials. PFIC Network has also added material on adults, genetics and diagnosis, and plans to add new content into 2026 while continuing to assess and respond to the educational needs of our community.

    Expenses $384,544 · Grants $96,512

As filed on the 2025 return.

Listed in Part VII

  • Emily Ventura

    Co-Founder Executive Director

    Total calculated
    $74,132
    From this org
    $73,041
    From related orgs
    $0
    Other
    $1,091
    Hours/week
    40

  • Tara Kearns

    Co-Founder

    Total calculated
    $3,775
    From this org
    $3,775
    From related orgs
    $0
    Other
    $0
    Hours/week
    2

  • Walter Perez

    President

    Total calculated
    $0
    Hours/week
    2

  • Hayley Ardila

    Treasurer

    Total calculated
    $0
    Hours/week
    2

  • Charmaine Gravener

    Vice President

    Total calculated
    $0
    Hours/week
    1

  • Erin Hovey

    Secretary

    Total calculated
    $0
    Hours/week
    2

  • Erik Lontok

    Director

    Total calculated
    $0
    Hours/week
    1

  • Tyler Bradley

    Director

    Total calculated
    $0
    Hours/week
    1

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.

Grants on this return

Provenance

Return type
form_990
Tax year
2025
Filed
26 August 2026
IRS schema version
2025v4.2
Source object
202642389349301694

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.