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US nonprofit · EIN 831084501 · Clay City, KYiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 831084501) - NTEE activity code, address.Board and officers IRS Form 990 annual filings, Part VII (directors, trustees, officers, key employees), read year by year to observe tenure.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2025: assets, liabilities, staff, website, telephone, pay, grants paid (Schedule I).Finances by year IRS Form 990 e-file data - total revenue and total expenses by tax year.Renewal outlook Computed by Governance Register from the observed filing history and filed revenue (us-approach-v4-clean). Not a statement that the organisation is recruiting.Principal officer IRS Form 990-N (e-Postcard) - principal officer named for tax year 2018.Deductibility IRS Publication 78 data (code PC), downloaded 18 October 2026.State registers Colorado Secretary of State (17 October 2026).Licence US Federal Government public domain.How we handle data

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource

Donations deductible
Revenue
$697k
year to 31 December 2025
Expenses
$530k
year to 31 December 2025
Total assets
$458k
$109k liabilities
Net assets
$349k
assets less liabilities
Directors and trustees
7
6.0y av
Staff
4
30 volunteers
Left since last filing
0
no seats appear to have opened
Voting members
7
reported in Part VI
How am I connected?

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource's network

7 peoplei7 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (7). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.

The board

7 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 7 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.
NameRole as filedSinceOn the board
Charmaine GravenerDirector2021
5 yrs
Emily VenturaCo-Founder Executive Director2019
7 yrs
Erin HoveyCompany secretary2020
6 yrs
Erik LontokDirector2024
2 yrs
Hayley WattsTreasurer2020
6 yrs
Tara KearnsVice-President Co- Founder2019
7 yrs
Walter PerezPresident2020
6 yrs
Under 5 years5 to 6 years6 years or more

Pay and hours

year to 31 December 2025iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.
NameTitle as filedHours a weekPay from the organisationRelated organisationsOther
Emily VenturaCo-Founder Executive Director40$73k$1k
Tara KearnsCo-Founder2$4k
Walter PerezPresident2$0
Hayley ArdilaTreasurer2$0
Charmaine GravenerVice President1$0
Erin HoveySecretary2$0
Erik LontokDirector1$0
Tyler BradleyDirector1$0

Colorado roster

4 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20253028383). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.
NameTitle as filed
Emily Ventura
Hayley WattsTreasurer
Emily VenturaExecutive Director
Emily VenturaExecutive Director/Co-Founder

About

Legal name
Progressive Familial Intrahepatic Cholestasis Advocacy and Resource
EIN
831084501
Address
295 Forge Mill Rd, Clay City, KY, 40312-9540
State
Kentucky
Mission
To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. (as filed on the Form 990)
Activity (NTEE)
G01 Voluntary health associations and medical disciplines
IRS classification
501(c)03 (tax-exempt under section 501(c)(3) where shown)
Classified purpose
Voluntary Health Associations & Medical Disciplines
Size band
4 (IRS master file code)
Formed
2018
Principal officer
Emily Ventura (as named on the Form 990)
IRS ruling date
1 September 2018
Status
Code 01 (unconditional exemption)
Form 990 filings on record
6, latest 2024
IRS Publication 78
PC (contributions deductible)

Most connected

Longest observed on the filings

≥7years on the filingsEmily Ventura
≥7years on the filingsTara Kearns
≥6years on the filingsErin Hovey
≥6years on the filingsHayley Watts

Latest return

year to 31 December 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2025. US dollars, as filed.
Total assets
$458k
Total liabilities
$109k
Net assets or fund balances
$349k
Contributions and grants received
$713k
Program service revenue
$0
Grants and similar paid out
$97k
Employees
4
Volunteers
30

Filed finances

1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.
Tax yearTotal revenueTotal expensesSurplus or deficit
2024$352k$502kDeficit $150k

As filed on the IRS Form 990. US dollars.

Grants paid

1 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.
RecipientPurposeAmount
UCSF Benioff Childrens Hospitals$82k