Pachyonychia Congenita Fund

Organization Overview

Pachyonychia Congenita Fund, operating under the name Pc Project, is located in Holladay, UT. The organization was established in 2004. According to its NTEE Classification (H20) the organization is classified as: Birth Defects & Genetic Diseases Research, under the broad grouping of Medical Research and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Pc Project is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Pc Project generated $684.9k in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 10.3% each year . All expenses for the organization totaled $341.6k during the year ending 12/2021. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

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

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


IPCRR MAINTAINED THE INTERNATIONAL PACHYONYCHIA CONGENITA RESEARCH REGISTRY (IPCRR). SINCE 2004, AND WITH IRB APPROVAL, THE IPCRR HAS PROVIDED OVER 2,000 PATIENTS FREE GENETIC TESTING, PHYSICIAN CONSULTATIONS, PATIENT MEETINGS, CHAT GROUPS, SPECIAL WEB MEETINGS, AND MONTHLY PATIENT NEWSLETTERS. THROUGH THE IPCRR, PATIENTS ALSO HAVE OPPORTUNITIES TO PARTICIPATE IN CLINICAL TRIALS AND STUDIES.


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 300 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 100 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.


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Board, Officers & Key Employees

Name (title)Compensation
Jason Hunter CPA
Treasurer
$0
Jack Padovano
Chair
$0
Barbara Feinstein
Secretary
$0
Janice N Schwartz
Executive Di
$0
James Rittle
Board Member
$0
Kay Dee Holmes
Board Member
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$512,628
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$512,628
Total Program Service Revenue$0
Investment income $98,363
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $73,877
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $684,886

Grants Recieved

Over the last fiscal year, we have identified 1 grants that Pachyonychia Congenita Fund has recieved totaling $3,000.

Awarding OrganizationAmount
James Patrick Griffith Foundation

Denver, CO

PURPOSE: GENERAL CONTRIBUTION

$3,000
View Grant Recipient Profile

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