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Nonprofit · EIN 68-0567493

PACHYONYCHIA CONGENITA FUND

Tax-exempt · HOLLADAY, UT 84117

Financials

$491K$596K2023$817K$743K2024
Revenue Expenses · by fiscal year end
Financials of PACHYONYCHIA CONGENITA FUND by year, from its e-filed returns
Year endedFormRevenueExpensesNet incomeTotal assetsLiabilitiesNet assets
December 31, 2024990$816,533$743,239$73,294$3,007,104$22,320$2,984,784
December 31, 2023990$490,833$595,549-$104,716$3,130,275$119,049$3,011,226
Financial details: 990 for the year ended December 31, 2024

Revenue

Contributions, gifts and grants
$437,142
Program service revenue
$650
Investment income
$377,186
Net gain from sales of assets
$276,532
Other revenue
$1,555

Expenses

Grants and similar amounts paid
$465,221
Other salaries and wages
$88,083
Salaries, compensation and benefits (total)
$94,821
Professional fundraising fees
$9,098
Accounting fees
$6,830
Occupancy
$14,721
Travel
$24,999
Depreciation
$8,852
Program services (functional)
$679,137
Management and general (functional)
$31,979
Fundraising (functional)
$32,123

Balance sheet and other

Total assets, start of year
$3,130,275
Total assets, end of year
$3,007,104
Total liabilities, end of year
$22,320
Net assets, end of year
$2,984,784
Land, buildings and equipment
$31,031
Publicly traded securities
$2,687,890
Net assets without donor restrictions
$2,984,784
Gross receipts
$3,821,152
Employees
2
Volunteers
18
Year formed
2003
State of legal domicile
UT

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, 2024, highest compensation first.

NameTitleHours / weekCompensation
JANICE N SCHWARTZEXECUTIVE DI
Trustee or director, Officer
40$0
JACK PADOVANOCHAIR
Trustee or director, Officer
4$0
KAY DEE HOLMESSECRETARY
Trustee or director, Officer
0.5$0
JASON HUNTER CPATREASURER
Trustee or director, Officer
0.5$0
C DAVID HANSEN MDBOARD MEMBER
Trustee or director
8$0
JAMES RITTLEBOARD MEMBER
Trustee or director
0.5$0
AARON KLEINBOARD MEMBER
Trustee or director
0.5$0
990 for the year ended December 31, 2023: 7 people
NameTitleHours / weekCompensation
JANICE N SCHWARTZEXECUTIVE DI
Trustee or director, Officer
40$0
JACK PADOVANOCHAIR
Trustee or director, Officer
4$0
KAY DEE HOLMESSECRETARY
Trustee or director, Officer
0.5$0
JASON HUNTER CPATREASURER
Trustee or director, Officer
0.5$0
C DAVID HANSEN MDBOARD MEMBER
Trustee or director
2$0
JAMES RITTLEBOARD MEMBER
Trustee or director
0.5$0
AARON KLEINBOARD MEMBER
Trustee or director
0.5$0

Address and contacts

Address (IRS master file)
PO BOX 17850, HOLLADAY, UT 84117-0850
In care of
% MARY E SCHWARTZ
Principal officer (990 for 2024)
JANICE N SCHWARTZ, PO BOX 17850, HOLLADAY, UT 84117
Signed the 990
NATHAN SCHWARTZ, TREASURER
Phone
(801) 987-8758
Return prepared by
BOUNTIFUL PEAK ADVISORS

Mission

THE ORGANIZATION'S MISSION IS TO FIGHT FOR A CURE FOR THE PACHYONYCHIA CONGENITA DISEASE, CONNECT AND HELP PATIENTS, AND EMPOWER RESEARCH.

990 for the year ended December 31, 2024

Program accomplishments

  • PATIENT SUPPORT PROVIDED FUNDING FOR RESEARCH IN FINDING A CURE FOR PACHYONYCHIA CONGENITA. MAINTAINED A WEB SITE TO PROVIDE INFORMATION ABOUT AND ASSIST RESEARCH EFFORTS. PROVIDED SUPPORT MEETINGS TO INDIVIDUALS AFFECTED BY PACHYONYCHIA CONGENITA. PROVIDED INDIVIDUAL SUPPORT AS NEEDED FOR PATIENTS VIA EMAILS, TELEPHONE CALLS, OR THROUGH THE HELP OF PC PATIENT ADVOCATES OR MEMBERS OF THE PC SCIENTIFIC AND MEDICAL ADVISORY BOARD. MORE SUPPORT IS OUTLINED NEXT IN THE RESOURCES AND BENEFITS THROUGH MEMBERSHIP IN THE IPCRR.
    Expenses $72,974 · revenue $650
  • IPCRR MAINTAINED THE INTERNATIONAL PACHYONYCHIA CONGENITA RESEARCH REGISTRY (IPCRR). SINCE 2004, AND WITH IRB APPROVAL, THE IPCRR HAS PROVIDED OVER 3000 PATIENTS WITH FREE GENETIC TESTING, PHYSICIAN CONSULTATIONS, PATIENT MEETINGS, CHAT GROUPS, SPECIAL WEB MEETINGS, AND BI-MONTHLY PATIENT NEWSLETTERS. THROUGH THE IPCRR, PATIENTS ALSO HAVE OPPORTUNITIES TO PARTICIPATE IN CLINICAL TRIALS AND STUDIES.
    Expenses $99,962
  • IPCC SINCE 2004, THE IPCC HAS HELD ANNUAL SCIENTIFIC MEETINGS, AWARDED RESEARCH GRANTS, COORDINATED RESEARCH WITH BOTH ACADEMIC AND PRIVATE INSTITUTIONS, CONDUCTED MONTHLY WEB MEETINGS WITH THE IPCC GENETICS TEAM, ESTABLISHED AND MET ANNUAL RESEARCH GOALS, AND DISTRIBUTED QUARTERLY NEWSLETTERS TO OVER 400 PHYSICIANS AND SCIENTISTS. WORKING WITH LEADERS IN THE IPCC, CLINICAL TRIALS HAVE BEEN COMPLETED AND NUMEROUS CLINICAL AND RESEARCH STUDIES HAVE BEEN CONDUCTED. IT IS ESTIMATED THAT NEARLY 200 ARTICLES HAVE BEEN PUBLISHED IN LEADING SCIENTIFIC JOURNALS BY THE ORGANIZATION OR ITS IPCC MEMBERS, A NUMBER OF WHICH CITED IPCRR DATA AND RESEARCH AND CLINICAL STUDIES DONE THROUGH IPCC.
    Expenses $506,201 · grants $465,221

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 yearYear endedDueIRS public records
2025December 31, 2025May 15, 2026Not on file
2024December 31, 2024May 15, 2025990 on file
2023December 31, 2023May 15, 2024990 on file

IRS record

EIN
68-0567493
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
2004
Accounting year ends
December
Files
Form 990 or 990-EZ
Category (NTEE)
Medical research (H20)
Assets (IRS master file)
$3,007,104
Income (IRS master file)
$3,821,152

Filing history

FormYear endedRevenueExpensesAssetsReturn
990December 2024$816,533$743,239$3,007,104XML
990December 2023$490,833$595,549$3,130,275XML
990December 2022$654,819$379,433$3,057,177IRS
990December 2021–––IRS
990December 2020–––IRS
990December 2018–––IRS

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 68-0567493).

Questions about PACHYONYCHIA CONGENITA FUND

What is the EIN of PACHYONYCHIA CONGENITA FUND?
The employer identification number (EIN) of PACHYONYCHIA CONGENITA FUND is 68-0567493.
Is PACHYONYCHIA CONGENITA FUND tax-exempt?
Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2004.
Are donations to PACHYONYCHIA CONGENITA FUND tax-deductible?
Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
Which annual return does PACHYONYCHIA CONGENITA FUND 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 PACHYONYCHIA CONGENITA FUND due?
The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
When did PACHYONYCHIA CONGENITA FUND last file with the IRS?
The latest return in the IRS public files is the 990 for the year ended December 2024.
Who is the principal officer of PACHYONYCHIA CONGENITA FUND?
The 990 for the year ended December 31, 2024 names JANICE N SCHWARTZ.
Who are the officers and directors of PACHYONYCHIA CONGENITA FUND?
The 990 for the year ended December 31, 2024 lists 7 people; 0 received compensation from the organization.
How much revenue does PACHYONYCHIA CONGENITA FUND have?
On its 990 for the year ended December 31, 2024 it reported revenue of $816,533, expenses of $743,239 and total assets of $3,007,104 at year end.

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