Pachyonychia Congenita Fund
- Assets
- $3.1m
- Revenue
- $490.8k
- Investments
- $0.0
- Employees
- 1
- Location
- Holladay, UT
- Founding
- 07/2004
- Data as of
- 12/2023
- EIN
- 68-0567493
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 12/2023, Pc Project generated $490.8k in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 4.0% each year. All expenses for the organization totaled $595.5k during the year ending 12/2023. While expenses have increased by 5.8% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
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 2,500 PATIENTS WITH 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.
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 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) | Role | Hours | Compensation |
|---|---|---|---|
Janice N Schwartz Executive Di | OfficerTrustee | 40 | $0 |
Jack Padovano Chair | OfficerTrustee | 4 | $0 |
Kay Dee Holmes Secretary | OfficerTrustee | 0.5 | $0 |
Jason Hunter CPA Treasurer | OfficerTrustee | 0.5 | $0 |
C David Hansen MD Board Member | Trustee | 2 | $0 |
James Rittle Board Member | Trustee | 0.5 | $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 | $395,801 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $395,801 |
| Total Program Service Revenue | $3,735 |
| Investment income | $65,899 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $22,711 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $490,833 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $1,500 |
| Grants and other assistance to Foreign Orgs/Individuals | $271,820 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $84,793 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $6,497 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $6,425 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $17,174 |
| Fees for services: Other | $45,746 |
| Advertising and promotion | $0 |
| Office expenses | $9,159 |
| Information technology | $19,083 |
| Royalties | $0 |
| Occupancy | $5,231 |
| Travel | $55,640 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $7,296 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $5,878 |
| Insurance | $1,976 |
| All other expenses | $0 |
| Total functional expenses | $595,549 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $354,386 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $8,352 |
| Net Land, buildings, and equipment | $36,984 |
| Investments—publicly traded securities | $2,719,639 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $10,914 |
| Total assets | $3,130,275 |
| Accounts payable and accrued expenses | $7,360 |
| Grants payable | $100,000 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $11,689 |
| Total liabilities | $119,049 |
| Net assets without donor restrictions | $3,011,226 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $3,130,275 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Sage Research Foundation Inc Boise, ID | $1,585,420 | $7,789,723 |
Pachyonychia Congenita Fund Holladay, UT | $3,130,275 | $490,833 |
Newborn Hope Incorporated Colorado Springs, CO | $450,835 | $147,853 |
Minkoff Center For Jewish Genetics Dba Jewish Genetic Diseases Center Scottsdale, AZ | $836,999 | $106,155 |
Southwest Institute For Families And Children With Special Needs Phoenix, AZ | $137,623 | $219,226 |
Healthy Birth And Infant Brains Foundation Casper, WY | $725,524 | $96,677 |
Movement Disorders Foundation Englewood, CO | $664,057 | $147,641 |
Warner House Inc Oro Valley, AZ | $18,662 | $0 |
Rory Belle Foundation Denver, CO | $267,644 | $214,750 |
Finding Hope For Frrs1l Fort Collins, CO | $65,823 | $0 |