Pachyonychia Congenita Project does not meet the following 1 Standards for Charity Accountability:
Standard 10 (Ending Net Assets)
Avoid accumulating funds that could be used for current program activities. To meet this standard, the charity's unrestricted net assets available for use should not be more than three times the size of the past year's expenses or three times the size of the current year's budget, whichever is higher.
PC Project does not meet this Standard because:
- According to its audited financial statements for the year ending December 31, 2019, the organization's total unrestricted net assets were $2,135,894, or 4 times the charity's total expenses of $480,878.
In response to this report, PC Project states, in part that:
"The size of the unrestricted new assets is due to the generosity of a small number of individuals whose goal is to create a rainy day investment fund that is not part of PC Project's standard operating budget. This fund ensures that regardless of difficult economic times, PC Project can continue to fulfill its mission and serve PC patients worldwide."
Pachyonychia Congenita Project meets the remaining 19 Standards for Charity Accountability.
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Year, State Incorporated
2003, UT
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Stated Purpose
"to find effective treatments and a cure for Pachyonychia Congenita, a painful, debilitating skin disorder, through helping and connecting patients, empowering research, and partnering with industry."
Pachyonychia Congenita Project (PC Project) reports that it works to help and connect patients while promoting research for effective treatments and eventually a cure for Pachyonychia Congenita (PC). The organization runs the International PC Research Registry (IPCRR) which gathers data from patients and provides fully funded genetic testing to those in the IPCRR to identify the specific gene and mutation. PC Project hosts the annual International Pachyonychia Congenita Consortium (IPCC) which facilitates collaboration among scientists, physicians, and other professionals interested in advancing research and translational therapeutics for PC. The organization also provides PC patients with support and resources such as PC treatment studies, publications, online patient forums, support meetings, and more. In 2019, PC Project reports that it grew the IPCRR patient registry to 1,343 patients, enrolled 75 patients in a PC clinical trial, and hosted 60 scientists, clinicians, and drug developers at the IPCC annual symposium.
For the year ended December 31, 2019, Pachyonychia Congenita Project's program expenses were:
Program services |
$364,352 |
Total Program Expenses: |
$364,352 |
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Chief Executive
Janice N. Schwartz, Executive Director
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Compensation*
$0
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Chair of the Board
Jack Padovano
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Chair's Profession / Business Affiliation
Owner and Lead Consultant, IPM Advancement
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Board Size
7
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Paid Staff Size
2
*2019 compensation, as reported by the organization, includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Note 1: PC Project reports that Ms. Schwartz volunteers her time with the organization.
Note 2: Holly Evans, International Patient Support Officer, was the highest paid employee, receiving $73,975 in compensation.
Method(s) Used:
Grant proposals, Internet, Invitations to fund raising events, Planned giving arrangements, Cause- related marketing (affinity credit cards, consumer product sales, etc.)
Fundraising costs were 12% of related contributions. (Related contributions, which totaled $610,320, are donations received as a result of fundraising activities.)
This organization is tax-exempt under section 501(c) (3) of the Internal Revenue Code.It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
The following information is based on Pachyonychia Congenita Project's audited financial statements for the year ended December 31, 2019.
Source of Funds |
Contributions |
$419,420 |
Investment income, net |
$202,225 |
In-kind contributions |
$190,900 |
Patient support fees |
$5,852 |
Interest and dividends |
$601 |
Other income |
$454 |
Total Income |
$819,452 |
- Programs: 76%
- Fundraising: 16%
- Administrative: 8%
Total Income |
$819,452 |
Program expenses |
$364,352 |
Fundraising expenses |
$75,850 |
Administrative expenses |
$40,676 |
Other expenses |
$0 |
Total expenses: |
$480,878 |
Income in Excess of Expenses |
$338,574 |
Beginning Net Assets |
$1,799,449 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$2,138,023 |
Total Liabilities |
$6,687 |
Total Assets |
$2,144,710 |
Note: According to the organization's audited financial statements for the year ended December 31, 2019, PC Project received in-kind gifts totaling $190,900 in the form of Executive Director compensation ($100,000), physician and scientist compensation ($50,100), professional fundraising services ($39,000), and certified public accounting services ($1,800).