Civic Intelligence

Pachyonychia Congenita Fund

EIN 68-0567493 • 501(c)3 • Holladay, UT

Profile

Medical research - pachyonychia congenita

PO Box 17850Holladay, UT 84117

www.pachyonychia.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

31st percentile

0.01x

Higher debt load relative to assets than 31% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

37th percentile

0.03x

Higher debt load relative to revenue than 37% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

59th percentile

9.0%

Higher net margin than 59% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

40th percentile

$0

Higher top officer pay than 40% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Asset Growth

27th percentile

-3.9%

Faster asset growth than 27% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

87th percentile

66%

Faster revenue growth than 87% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets31st percentile

Assets

Down

$3,007,104

Down $123,171 (-3.9%) from 2023

Liabilities

Down

$22,320

Down $96,729 (-81%) from 2023

Net Assets

Down

$2,984,784

Down $26,442 (-0.9%) from 2023

Operations
Liabilities / Revenue37th percentileNet Margin59th percentile

Revenue

Up

$816,533

Up $325,700 (+66%) from 2023

Expenses

Up

$743,239

Up $147,690 (+25%) from 2023

Net Income

Up

$73,294

Up $178,010 (+170%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth27th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$4.0M$3.0M$2.0M$1.0M$0Assets 2011: $155,270Liabilities 2011: $10,145Net Assets 2011: $145,1252011Assets 2012: $342,294Liabilities 2012: $15,671Net Assets 2012: $326,6232012Assets 2013: $582,132Liabilities 2013: $24,983Net Assets 2013: $557,1492013Assets 2014: $1,090,530Liabilities 2014: $8,173Net Assets 2014: $1,082,3572014Assets 2015: $1,055,851Liabilities 2015: $4,268Net Assets 2015: $1,051,5832015Assets 2016: $1,420,135Liabilities 2016: $8,731Net Assets 2016: $1,411,4042016Assets 2017: $1,423,709Liabilities 2017: $653Net Assets 2017: $1,423,0562017Assets 2018: $1,805,683Liabilities 2018: $6,234Net Assets 2018: $1,799,4492018Assets 2019: $2,144,710Liabilities 2019: $6,687Net Assets 2019: $2,138,0232019Assets 2020: $2,737,401Liabilities 2020: $1,971Net Assets 2020: $2,735,4302020Assets 2021: $3,157,668Liabilities 2021: $2,485Net Assets 2021: $3,155,1832021Assets 2022: $3,057,177Liabilities 2022: $136,398Net Assets 2022: $2,920,7792022Assets 2023: $3,130,275Liabilities 2023: $119,049Net Assets 2023: $3,011,2262023Assets 2024: $3,007,104Liabilities 2024: $22,320Net Assets 2024: $2,984,7842024

Highlighted filing

2024

Assets$3,007,104
Liabilities$22,320
Net Assets$2,984,784
Open 2024 Filing

Operations Trend

Revenue Growth87th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$1.0M$500K$0-$500KExpenses 2011: $236,5452011Expenses 2012: $287,5652012Revenue 2013: $520,485Expenses 2013: $289,860Net Income 2013: $230,6252013Revenue 2014: $852,351Expenses 2014: $299,959Net Income 2014: $552,3922014Revenue 2015: $345,546Expenses 2015: $359,263Net Income 2015: -$13,7172015Revenue 2016: $743,859Expenses 2016: $442,775Net Income 2016: $301,0842016Revenue 2017: $258,292Expenses 2017: $322,403Net Income 2017: -$64,1112017Revenue 2018: $843,672Expenses 2018: $375,828Net Income 2018: $467,8442018Revenue 2019: $470,023Expenses 2019: $301,076Net Income 2019: $168,9472019Revenue 2020: $641,236Expenses 2020: $189,324Net Income 2020: $451,9122020Revenue 2021: $684,886Expenses 2021: $341,645Net Income 2021: $343,2412021Revenue 2022: $654,819Expenses 2022: $379,433Net Income 2022: $275,3862022Revenue 2023: $490,833Expenses 2023: $595,549Net Income 2023: -$104,7162023Revenue 2024: $816,533Expenses 2024: $743,239Net Income 2024: $73,2942024

Highlighted filing

2024

Revenue$816,533
Expenses$743,239
Net Income$73,294
Open 2024 Filing

Filings

Most recent year

2024 • Form 990XML pending. An XML filing is linked for this year, but detailed extraction is still pending.

Open filing
Assets
$3,007,104
Liabilities
$22,320
Net assets
$2,984,784
Revenue
$816,533
Expenses
$743,239
Net income
$73,294
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.01$0.02$2.98$0.82$0.74$0.07
2023Summary only. Only limited summary data is available for this year.$3.13$0.12$3.01$0.49$0.60$0.10
2022Summary only. Only limited summary data is available for this year.$3.06$0.14$2.92$0.65$0.38$0.28
2021Summary only. Only limited summary data is available for this year.$3.16$0.00$3.16$0.68$0.34$0.34
2020Summary only. Only limited summary data is available for this year.$2.74$0.00$2.74$0.64$0.19$0.45
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.14$0.01$2.14$0.47$0.30$0.17
2018Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.81$0.01$1.80$0.84$0.38$0.47
2017Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.42$0.00$1.42$0.26$0.32$0.06
2016Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.42$0.01$1.41$0.74$0.44$0.30
2015XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.06$0.00$1.05$0.35$0.36$0.01
2014Detailed filing. Detailed filing data is available for this year.$1.09$0.01$1.08$0.85$0.30$0.55
2013Detailed filing. Detailed filing data is available for this year.$0.58$0.02$0.56$0.52$0.29$0.23
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.34$0.02$0.33$0.29
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.16$0.01$0.15$0.24
Latest Detailed Filing

The latest 2024 filing currently has linked XML that has not been fully parsed yet. Showing the latest detailed filing from 2018 below.

Jump To
Filing Snapshot
Filing Period
Jan 1, 2018 to Dec 31, 2018
Signed
May 15, 2019
Return Version
2018v3.1
Gross Receipts
$1,458,919
Mission and Program Overview

Mission

The organization is a patent advocacy group with the mission of (a) fighting for a cure, (b) empowering research, and (c) connecting with and helping patients suffering from the disease.

The organization's mission is to fight for a cure for the pachyonychia congenita disease, connect and help patients, and empower research.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,071,751$1,014,324▼ $57,427
Cash and Non-Interest-Bearing Accounts$340,906$780,001▲ $439,095
Prepaid Expenses and Deferred Charges$10,195$8,434▼ $1,761
Land, Buildings, and Equipment, Net$857$2,924▲ $2,067
Total Assets$1,423,709$1,805,683▲ $381,974
Liabilities
Accounts Payable and Accrued Expenses$653$6,234▲ $5,581
Total Liabilities$653$6,234▲ $5,581
Net Assets / Fund Balance
Unrestricted Net Assets$1,423,056$1,799,449▲ $376,393
Total Net Assets Fund Balance$1,423,056$1,799,449▲ $376,393
Total Liabilities and Net Assets / Fund Balance$1,423,709$1,805,683▲ $381,974

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$2,924$14,390$17,314
Compensation and Service Providers
Top Officer Pay40th percentile

Board Members and Trustees

NameTitle
Jack PadovanoChair
C David Hansen MdBoard Member
James RittleBoard Member
Janice N SchwartzExecutive Di
Barbara FeinsteinSecretary
Jason Hunter CPATreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$800,723
Program Service Revenue
$710
Investment Income
$42,239
Other Revenue
$0
All Other Contributions
$800,723
Change in Net Assets
$467,844

Audited Revenue Reconciliation

Revenue per Audited Statements
$843,672
Revenue Not Reported on Form 990
$79,357
Total Revenue per Audited Statements
$923,029
Total Revenue per Form 990
$843,672
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$167,257
Grants and Similar Amounts Paid$117,048
Salaries, Compensation, and Employee Benefits$71,553
Total Fundraising Expense$30,504
Professional Fundraising Fees$19,970

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Foreign Grants$117,048--$117,048
Other Salaries and Wages$61,943$3,178$209$65,330
Fees for Services Other$45,669$5,670-$51,339
Travel$34,292--$34,292
Information Technology$17,953$2,227$358$20,538
Fees for Services Professional Fundraising--$19,970$19,970
Occupancy$11,451$1,627$508$13,586
Office Expenses$5,124$1,286$347$6,757
Fees for Services Accounting-$6,300-$6,300
Payroll Taxes$4,739$243$16$4,998
Conferences and Meetings$2,000--$2,000
Other Employee Benefits$1,161$60$4$1,225
Other Expenses$7$194$641$842
Insurance-$740-$740
Depreciation Depletion$404$21$1$426
Total Functional Expenses$315,941$29,383$30,504$375,828

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$546,636
Expenses per Audited Statements$375,828
Total Expenses per Form 990$375,828
Expenses Not Reported on Form 990$170,808
International Activity

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
Yes
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
Yes

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$19,970
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
No
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Page 6, Part VI, Line 2

“Janice schwartz mary schwartz ed former ed daughter-in-law/mother-in-law”

Form 990, Page 6, Part VI, Line 11B

“The board of directors reviews a draft of the form 990 before the form is filed. A copy of the finalized tax return is provided to the board of directors each year after the return is filed.”

Form 990, Page 6, Part VI, Line 12C

“The organization has a formal conflict of interest policy. This policy requires annual written disclosure of potential conflicts of interest by all board members and management. Conflict of interest forms are reviewed annually at least annually by the executive director and board chair. If a conflict is determined to exist, board members are recused from voting on topics related to the conflict.”

Form 990, Page 6, Part VI, Line 17

“Minnesota, missouri, new jersey, new mexico, new york, north carolina, ohio, oregon, pennsylvania, rhode island, south carolina, tennessee, utah, virginia, washington, west virginia, wisconsin”

Form 990, Page 6, Part VI, Line 19

“The organization's governing documents, conflict of interest policy, and financial statements are available to the public upon written request.”

Filing and Contact Details

Filer

Filer Name
Pachyonychia Congenita Fund
EIN
68-0567493
Phone
8019878758
Address
PO BOX 17850, HOLLADAY, UT 84117
Doing Business As
Pc Project

Signing Officer

Name
Jason Hunter CPA
Title
Treasurer
Phone
8019878758
Signed
2019-05-15
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Janice N Schwartz
Formed
2003
Legal Domicile
Ut
Voting Board Members
5
Independent Board Members
5
Employees
1
Volunteers
34

Preparer

Firm
Shaw & Co Pc
Address
1564 SOUTH 500 WEST SUITE 201, BOUNTIFUL, UT 84010-7400
Preparer
Shalaun T Howell CPA
Phone
8012943155
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Professional services 45,669 5,670 0”

Form 990, Part XI, Line 9

“Investment fees -7,792 investment fees 7,792”

Financial Statement Notes

Schedule D, Page 3, Part X

“The organization is exempt from federal income taxes under section 501(c) (3) of the internal revenue code and therefore has made no provision for federal income taxes in the accompanying financial statements. In addition, the organization has been determined by the internal revenue service not to be a "private foundation" within the meaning of section 509 (a) of the internal revenue code. There was no unrelated business income for the year ended december 31, 2018. The organization's forms 990, return of organization exempt from income tax, for the years ending december 31, 2018, 2017, 2016, and 2015 are subject to examination by the irs, generally for three years after they were filed. Generally accepted accounting principles require tax effects from an uncertain tax position to be recognized in the financial statements only if the position is more likely than not to be sustained if the position were to be challenged by a taxing authority. The assessment of the tax position is based solely on the technical merits of the position, without regard to the likelihood that the tax position may be challenged. If an uncertain tax position meets the more-likely-than-not threshold, the largest amount of tax benefit that is greater than 50% likely to be recognized upon ultimate settlement with the taxing authority is recorded. The organization's primary tax positions relate to its status as a not- for-profit entity exempt from income taxes and classification of activities related to its exempt purpose. Management has evaluated the tax positions reflected in the organization's tax filings and does not believe that any material uncertain tax positions exist.”

Schedule D, Page 4, Part XI, Line 2D

“INVESTMENT FEES -7,792”

Schedule D, Page 4, Part XII, Line 2D

“INVESTMENT FEES -7,792”

Raw XML AppendixShowing 400 of 487 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
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IRS990/MissionDesc0THE ORGANIZATION'S MISSION IS TO FIGHT FOR A CURE FOR THE PACHYONYCHIA CONGENITA DISEASE, CONNECT AND HELP PATIENTS, AND EMPOWER RESEARCH.
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IRS990/ProgSrvcAccomActy2Grp/Desc0IPCRR MAINTAINED THE INTERNATIONAL PACHYONYCHIA CONGENITA RESEARCH REGISTRY (IPCRR). SINCE 2004, AND WITH IRB APPROVAL, THE IPCRR HAS PROVIDED OVER 1,900 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.
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IRS990/ProgSrvcAccomActy3Grp/Desc0SPONSORED THE INTERNATIONAL PACHYONYCHIA CONGENITA CONSORTIUM (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 200 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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IRS990ScheduleA/FactsAndCircumstancesTestTxt0THE FOLLOWING FACTS AND CIRCUMSTANCES ALSO WERE REPORTED TO COME TO A FINAL DETERMINATION THAT THE ORGANIZATION IS A PUBLIC CHARITY: 1.170A-9(E)(3)(II) ATTRACTION OF PUBLIC SUPPORT. PACHYONYCHIA CONGENITA (PC) IS AN ULTRA-RARE SKIN DISORDER WHICH CAUSES PAINFUL BLISTERS AND CALLUSES ON FEET AS WELL AS THICKENED NAILS, CYSTS, AND OTHER PAINFUL SYMPTOMS. THE ORGANIZATION'S PRIMARY GOALS HAVE BEEN (1) TO INTEREST LEADING SCIENTISTS AND PHYSICIANS WHO SPECIALIZE IN KERATIN DISORDERS IN RESEARCH FOR THE ULTRA-RARE DISORDER, PC, AND TO ESTABLISH COLLABORATION AMONG RESEARCHERS; (2) TO ESTABLISH AND MAINTAIN AN INTERNATIONAL PC PATIENT REGISTRY (IPCRR) AS A RESOURCE FOR SCIENTIFIC RESEARCH; AND (3) TO PROVIDE EDUCATION AND SUPPORT FOR PHYSICIANS, SCIENTISTS, AND PC PATIENTS AND THEIR FAMILIES WORLDWIDE. BY THEIR VERY NATURE, THESE TYPES OF ACTIVITIES HAVE THE POTENTIAL TO ATTRACT SUPPORT FROM GOVERNMENTAL UNITS AND PUBLIC CHARITIES ON A CONTINUOUS BASIS. AT NO TIME HAS THE ORGANIZATION CONDUCTED ACTIVITIES WHICH SERVE THE PERSONAL OR PRIVATE INTERESTS OF ITS FOUNDERS OR RELATED PARTIES. THE ORGANIZATION MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICITATION OF FUNDS. BROCHURES REQUESTING DONATIONS ARE WIDELY DISTRIBUTED AT SCIENTIFIC, PATIENT SUPPORT, AND PUBLIC EVENTS. THESE BROCHURES ARE ALSO DISTRIBUTED THROUGH DIRECT MAILINGS TO PERSONAL AND PROFESSIONAL CONTACTS. GRANT APPLICATIONS HAVE BEEN MADE TO FOUNDATIONS AND OTHERS. 1.170A-9(E)(III) PERCENTAGE OF FINANCIAL SUPPORT. THE ORGANIZATION RECEIVED 25.13% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2014 TO 2018. 1.170A-9(E)(3)(IV) SOURCES OF SUPPORT. THE ORGANIZATION HAS RECEIVED ITS SUPPORT FROM INDIVIDUALS, BUSINESSES, AND FOUNDATIONS NOT RELATED TO THE ORGANIZATION THROUGH EITHER BUSINESS OR FAMILY RELATIONS. IN ADDITION TO DIRECT DONATIONS, MANY INDIVIDUALS HAVE DONATED TIME AND SERVICES TO ASSIST THE ORGANIZATION IN ITS EXEMPT PURPOSE. 1.170A-9(E)(3)(V) REPRESENTATIVE GOVERNING BODY. THE ORGANIZATION HAS THREE BOARDS THAT GOVERN ITS ACTIVITIES: 1. THE BOARD OF TRUSTEES DOES NOT REPRESENT THE PERSONAL OR PRIVATE INTERESTS OF A LIMITED NUMBER OF DONORS OR RELATED PERSONS. ALL BOARD MEMBERS SERVE WITHOUT COMPENSATION. MEMBERS OF THE BOARD HAVE SPECIAL KNOWLEDGE OR EXPERTISE TO ASSIST IN FULFILLING ITS EXEMPT PURPOSE. 2. THE MEDICAL AND SCIENTIFIC ADVISORY BOARD IS A VOLUNTEER BOARD CONSISTING OF 21 PHYSICIANS AND SCIENTISTS WHO HAVE A SPECIALTY IN DERMATOLOGICAL RESEARCH AND GENETICS, WITH AN EMPHASIS IN KERATIN DISORDERS. SOME MEMBERS OF THIS BOARD ARE IN CONTACT DAILY WITH THE ORGANIZATION REGARDING RESEARCH AND PATIENT CARE. MANY ARE IN CONTACT SEVERAL TIMES EACH MONTH. CONFERENCE CALLS ARE REGULARLY SCHEDULED WITH THE ENTIRE GROUP AND WITH SPECIAL SUB-GROUPS FOR PLANNING. THIS BOARD IS AVAILABLE FOR CONSULTATION REGARDING PATIENT CARE AND PATIENT NEEDS. 3. VOLUNTARY PATIENT ADVOCATES WORK THROUGH VARIOUS SOCIAL MEDIA, SUCH AS FACEBOOK, TO PROVIDE PATIENT OUTREACH AND PATIENT-TO-PATIENT SUPPORT. 1.170A-9(E)(3)(VI) AVAILABILITY OF PUBLIC FACILITIES OR SERVICES; PUBLIC PARTICIPATION IN PROGRAMS OR POLICIES. (A) THE FACT THAT AN ORGANIZATION IS THE TYPE WHICH GENERALLY PROVIDES FACILITIES OR SERVICES DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC...WILL BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." IN FEBRUARY 2004, THE ORGANIZATION ORGANIZED THE FIRST INTERNATIONAL PC CONFERENCE IN WHICH 23 OF THE LEADING KERATIN SPECIALISTS ATTENDED, INCLUDING MARIO CAPECCHI (WINNER OF THE 2007 NOBEL PRIZE FOR MEDICINE). AT THE MEETING, THE GROUP FORMED THE INTERNATIONAL PC CONSORTIUM (IPCC) TO ENCOURAGE COLLABORATION FOR PC RESEARCH. THERE ARE NOW SEVERAL HUNDRED EXPERTS WHO ARE ACTIVE MEMBERS OF THE IPCC AND EACH HAS AGREED TO COLLABORATE AND SHARE REAGENTS AND EXPERTISE TO ASSIST OTHER IPCC MEMBERS IN REGARD TO PC RESEARCH AND PATIENT CARE. THE MAJORITY OF THESE PARTICIPANTS REPRESENT NON-GOVERNMENTAL ORGANIZATIONS THAT SERVE MEMBERS OF A CHARITABLE CLASS IN THE
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0OTHER INCOME 2,427
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt1THE FOLLOWING FACTS AND CIRCUMSTANCES ALSO WERE REPORTED TO COME TO A FINAL DETERMINATION THAT THE ORGANIZATION IS A PUBLIC CHARITY: 1.170A-9(E)(3)(II) ATTRACTION OF PUBLIC SUPPORT. PACHYONYCHIA CONGENITA (PC) IS AN ULTRA-RARE SKIN DISORDER WHICH CAUSES PAINFUL BLISTERS AND CALLUSES ON FEET AS WELL AS THICKENED NAILS, CYSTS, AND OTHER PAINFUL SYMPTOMS. THE ORGANIZATION'S PRIMARY GOALS HAVE BEEN (1) TO INTEREST LEADING SCIENTISTS AND PHYSICIANS WHO SPECIALIZE IN KERATIN DISORDERS IN RESEARCH FOR THE ULTRA-RARE DISORDER, PC, AND TO ESTABLISH COLLABORATION AMONG RESEARCHERS; (2) TO ESTABLISH AND MAINTAIN AN INTERNATIONAL PC PATIENT REGISTRY (IPCRR) AS A RESOURCE FOR SCIENTIFIC RESEARCH; AND (3) TO PROVIDE EDUCATION AND SUPPORT FOR PHYSICIANS, SCIENTISTS, AND PC PATIENTS AND THEIR FAMILIES WORLDWIDE. BY THEIR VERY NATURE, THESE TYPES OF ACTIVITIES HAVE THE POTENTIAL TO ATTRACT SUPPORT FROM GOVERNMENTAL UNITS AND PUBLIC CHARITIES ON A CONTINUOUS BASIS. AT NO TIME HAS THE ORGANIZATION CONDUCTED ACTIVITIES WHICH SERVE THE PERSONAL OR PRIVATE INTERESTS OF ITS FOUNDERS OR RELATED PARTIES. THE ORGANIZATION MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICITATION OF FUNDS. BROCHURES REQUESTING DONATIONS ARE WIDELY DISTRIBUTED AT SCIENTIFIC, PATIENT SUPPORT, AND PUBLIC EVENTS. THESE BROCHURES ARE ALSO DISTRIBUTED THROUGH DIRECT MAILINGS TO PERSONAL AND PROFESSIONAL CONTACTS. GRANT APPLICATIONS HAVE BEEN MADE TO FOUNDATIONS AND OTHERS. 1.170A-9(E)(III) PERCENTAGE OF FINANCIAL SUPPORT. THE ORGANIZATION RECEIVED 25.13% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2014 TO 2018. 1.170A-9(E)(3)(IV) SOURCES OF SUPPORT. THE ORGANIZATION HAS RECEIVED ITS SUPPORT FROM INDIVIDUALS, BUSINESSES, AND FOUNDATIONS NOT RELATED TO THE ORGANIZATION THROUGH EITHER BUSINESS OR FAMILY RELATIONS. IN ADDITION TO DIRECT DONATIONS, MANY INDIVIDUALS HAVE DONATED TIME AND SERVICES TO ASSIST THE ORGANIZATION IN ITS EXEMPT PURPOSE. 1.170A-9(E)(3)(V) REPRESENTATIVE GOVERNING BODY. THE ORGANIZATION HAS THREE BOARDS THAT GOVERN ITS ACTIVITIES: 1. THE BOARD OF TRUSTEES DOES NOT REPRESENT THE PERSONAL OR PRIVATE INTERESTS OF A LIMITED NUMBER OF DONORS OR RELATED PERSONS. ALL BOARD MEMBERS SERVE WITHOUT COMPENSATION. MEMBERS OF THE BOARD HAVE SPECIAL KNOWLEDGE OR EXPERTISE TO ASSIST IN FULFILLING ITS EXEMPT PURPOSE. 2. THE MEDICAL AND SCIENTIFIC ADVISORY BOARD IS A VOLUNTEER BOARD CONSISTING OF 21 PHYSICIANS AND SCIENTISTS WHO HAVE A SPECIALTY IN DERMATOLOGICAL RESEARCH AND GENETICS, WITH AN EMPHASIS IN KERATIN DISORDERS. SOME MEMBERS OF THIS BOARD ARE IN CONTACT DAILY WITH THE ORGANIZATION REGARDING RESEARCH AND PATIENT CARE. MANY ARE IN CONTACT SEVERAL TIMES EACH MONTH. CONFERENCE CALLS ARE REGULARLY SCHEDULED WITH THE ENTIRE GROUP AND WITH SPECIAL SUB-GROUPS FOR PLANNING. THIS BOARD IS AVAILABLE FOR CONSULTATION REGARDING PATIENT CARE AND PATIENT NEEDS. 3. VOLUNTARY PATIENT ADVOCATES WORK THROUGH VARIOUS SOCIAL MEDIA, SUCH AS FACEBOOK, TO PROVIDE PATIENT OUTREACH AND PATIENT-TO-PATIENT SUPPORT. 1.170A-9(E)(3)(VI) AVAILABILITY OF PUBLIC FACILITIES OR SERVICES; PUBLIC PARTICIPATION IN PROGRAMS OR POLICIES. (A) THE FACT THAT AN ORGANIZATION IS THE TYPE WHICH GENERALLY PROVIDES FACILITIES OR SERVICES DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC...WILL BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." IN FEBRUARY 2004, THE ORGANIZATION ORGANIZED THE FIRST INTERNATIONAL PC CONFERENCE IN WHICH 23 OF THE LEADING KERATIN SPECIALISTS ATTENDED, INCLUDING MARIO CAPECCHI (WINNER OF THE 2007 NOBEL PRIZE FOR MEDICINE). AT THE MEETING, THE GROUP FORMED THE INTERNATIONAL PC CONSORTIUM (IPCC) TO ENCOURAGE COLLABORATION FOR PC RESEARCH. THERE ARE NOW SEVERAL HUNDRED EXPERTS WHO ARE ACTIVE MEMBERS OF THE IPCC AND EACH HAS AGREED TO COLLABORATE AND SHARE REAGENTS AND EXPERTISE TO ASSIST OTHER IPCC MEMBERS IN REGARD TO PC RESEARCH AND PATIENT CARE. THE MAJORITY OF THESE PARTICIPANTS REPRESENT NON-GOVERNMENTAL ORGANIZATIONS THAT SERVE MEMBERS OF A CHARITABLE CLASS IN THE
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt2THE FOLLOWING FACTS AND CIRCUMSTANCES ALSO WERE REPORTED TO COME TO A FINAL DETERMINATION THAT THE ORGANIZATION IS A PUBLIC CHARITY: 1.170A-9(E)(3)(II) ATTRACTION OF PUBLIC SUPPORT. PACHYONYCHIA CONGENITA (PC) IS AN ULTRA-RARE SKIN DISORDER WHICH CAUSES PAINFUL BLISTERS AND CALLUSES ON FEET AS WELL AS THICKENED NAILS, CYSTS, AND OTHER PAINFUL SYMPTOMS. THE ORGANIZATION'S PRIMARY GOALS HAVE BEEN (1) TO INTEREST LEADING SCIENTISTS AND PHYSICIANS WHO SPECIALIZE IN KERATIN DISORDERS IN RESEARCH FOR THE ULTRA-RARE DISORDER, PC, AND TO ESTABLISH COLLABORATION AMONG RESEARCHERS; (2) TO ESTABLISH AND MAINTAIN AN INTERNATIONAL PC PATIENT REGISTRY (IPCRR) AS A RESOURCE FOR SCIENTIFIC RESEARCH; AND (3) TO PROVIDE EDUCATION AND SUPPORT FOR PHYSICIANS, SCIENTISTS, AND PC PATIENTS AND THEIR FAMILIES WORLDWIDE. BY THEIR VERY NATURE, THESE TYPES OF ACTIVITIES HAVE THE POTENTIAL TO ATTRACT SUPPORT FROM GOVERNMENTAL UNITS AND PUBLIC CHARITIES ON A CONTINUOUS BASIS. AT NO TIME HAS THE ORGANIZATION CONDUCTED ACTIVITIES WHICH SERVE THE PERSONAL OR PRIVATE INTERESTS OF ITS FOUNDERS OR RELATED PARTIES. THE ORGANIZATION MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICITATION OF FUNDS. BROCHURES REQUESTING DONATIONS ARE WIDELY DISTRIBUTED AT SCIENTIFIC, PATIENT SUPPORT, AND PUBLIC EVENTS. THESE BROCHURES ARE ALSO DISTRIBUTED THROUGH DIRECT MAILINGS TO PERSONAL AND PROFESSIONAL CONTACTS. GRANT APPLICATIONS HAVE BEEN MADE TO FOUNDATIONS AND OTHERS. 1.170A-9(E)(III) PERCENTAGE OF FINANCIAL SUPPORT. THE ORGANIZATION RECEIVED 22.12% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2013 TO 2017. 1.170A-9(E)(3)(IV) SOURCES OF SUPPORT. THE ORGANIZATION HAS RECEIVED ITS SUPPORT FROM INDIVIDUALS, BUSINESSES, AND FOUNDATIONS NOT RELATED TO THE ORGANIZATION THROUGH EITHER BUSINESS OR FAMILY RELATIONS. IN ADDITION TO DIRECT DONATIONS, MANY INDIVIDUALS HAVE DONATED TIME AND SERVICES TO ASSIST THE ORGANIZATION IN ITS EXEMPT PURPOSE. 1.170A-9(E)(3)(V) REPRESENTATIVE GOVERNING BODY. THE ORGANIZATION HAS THREE BOARDS THAT GOVERN ITS ACTIVITIES: 1. THE BOARD OF TRUSTEES DOES NOT REPRESENT THE PERSONAL OR PRIVATE INTERESTS OF A LIMITED NUMBER OF DONORS OR RELATED PERSONS. ALL BOARD MEMBERS SERVE WITHOUT COMPENSATION. MEMBERS OF THE BOARD HAVE SPECIAL KNOWLEDGE OR EXPERTISE TO ASSIST IN FULFILLING ITS EXEMPT PURPOSE. 2. THE MEDICAL AND SCIENTIFIC ADVISORY BOARD IS A VOLUNTEER BOARD CONSISTING OF 21 PHYSICIANS AND SCIENTISTS WHO HAVE A SPECIALTY IN DERMATOLOGICAL RESEARCH AND GENETICS, WITH AN EMPHASIS IN KERATIN DISORDERS. SOME MEMBERS OF THIS BOARD ARE IN CONTACT DAILY WITH THE ORGANIZATION REGARDING RESEARCH AND PATIENT CARE. MANY ARE IN CONTACT SEVERAL TIMES EACH MONTH. CONFERENCE CALLS ARE REGULARLY SCHEDULED WITH THE ENTIRE GROUP AND WITH SPECIAL SUB-GROUPS FOR PLANNING. THIS BOARD IS AVAILABLE FOR CONSULTATION REGARDING PATIENT CARE AND PATIENT NEEDS. 3. VOLUNTARY PATIENT ADVOCATES WORK THROUGH VARIOUS SOCIAL MEDIA, SUCH AS FACEBOOK, TO PROVIDE PATIENT OUTREACH AND PATIENT-TO-PATIENT SUPPORT. 1.170A-9(E)(3)(VI) AVAILABILITY OF PUBLIC FACILITIES OR SERVICES; PUBLIC PARTICIPATION IN PROGRAMS OR POLICIES. (A) THE FACT THAT AN ORGANIZATION IS THE TYPE WHICH GENERALLY PROVIDES FACILITIES OR SERVICES DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC...WILL BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." IN FEBRUARY 2004, THE ORGANIZATION ORGANIZED THE FIRST INTERNATIONAL PC CONFERENCE IN WHICH 23 OF THE LEADING KERATIN SPECIALISTS ATTENDED, INCLUDING MARIO CAPECCHI (WINNER OF THE 2007 NOBEL PRIZE FOR MEDICINE). AT THE MEETING, THE GROUP FORMED THE INTERNATIONAL PC CONSORTIUM (IPCC) TO ENCOURAGE COLLABORATION FOR PC RESEARCH. THERE ARE NOW SEVERAL HUNDRED EXPERTS WHO ARE ACTIVE MEMBERS OF THE IPCC AND EACH HAS AGREED TO COLLABORATE AND SHARE REAGENTS AND EXPERTISE TO ASSIST OTHER IPCC MEMBERS IN REGARD TO PC RESEARCH AND PATIENT CARE. THE MAJORITY OF THESE PARTICIPANTS REPRESENT NON-GOVERNMENTAL ORGANIZATIONS THAT SERVE MEMBERS OF A CHARITABLE CLASS IN THE
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IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0THE ORGANIZATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C) (3) OF THE INTERNAL REVENUE CODE AND THEREFORE HAS MADE NO PROVISION FOR FEDERAL INCOME TAXES IN THE ACCOMPANYING FINANCIAL STATEMENTS. IN ADDITION, THE ORGANIZATION HAS BEEN DETERMINED BY THE INTERNAL REVENUE SERVICE NOT TO BE A "PRIVATE FOUNDATION" WITHIN THE MEANING OF SECTION 509 (A) OF THE INTERNAL REVENUE CODE. THERE WAS NO UNRELATED BUSINESS INCOME FOR THE YEAR ENDED DECEMBER 31, 2018. THE ORGANIZATION'S FORMS 990, RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX, FOR THE YEARS ENDING DECEMBER 31, 2018, 2017, 2016, AND 2015 ARE SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THEY WERE FILED. GENERALLY ACCEPTED ACCOUNTING PRINCIPLES REQUIRE TAX EFFECTS FROM AN UNCERTAIN TAX POSITION TO BE RECOGNIZED IN THE FINANCIAL STATEMENTS ONLY IF THE POSITION IS MORE LIKELY THAN NOT TO BE SUSTAINED IF THE POSITION WERE TO BE CHALLENGED BY A TAXING AUTHORITY. THE ASSESSMENT OF THE TAX POSITION IS BASED SOLELY ON THE TECHNICAL MERITS OF THE POSITION, WITHOUT REGARD TO THE LIKELIHOOD THAT THE TAX POSITION MAY BE CHALLENGED. IF AN UNCERTAIN TAX POSITION MEETS THE MORE-LIKELY-THAN-NOT THRESHOLD, THE LARGEST AMOUNT OF TAX BENEFIT THAT IS GREATER THAN 50% LIKELY TO BE RECOGNIZED UPON ULTIMATE SETTLEMENT WITH THE TAXING AUTHORITY IS RECORDED. THE ORGANIZATION'S PRIMARY TAX POSITIONS RELATE TO ITS STATUS AS A NOT- FOR-PROFIT ENTITY EXEMPT FROM INCOME TAXES AND CLASSIFICATION OF ACTIVITIES RELATED TO ITS EXEMPT PURPOSE. MANAGEMENT HAS EVALUATED THE TAX POSITIONS REFLECTED IN THE ORGANIZATION'S TAX FILINGS AND DOES NOT BELIEVE THAT ANY MATERIAL UNCERTAIN TAX POSITIONS EXIST.
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IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt2INVESTMENT FEES -7,792
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc0SCHEDULE D, PAGE 3, PART X
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IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc2SCHEDULE D, PAGE 4, PART XII, LINE 2D
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IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0PC SUPPORT, RESEARCH
IRS990ScheduleF/InterestInForeignTrustInd0false
IRS990ScheduleF/PassiveForeignInvestmestCoInd0false
IRS990ScheduleF/SupplementalInformationDetail/ExplanationTxt0THE PURPOSE OF THE GRANT TO PC EUROPE WAS TO SUPPORT PC STUDIES AND EVENTS IN EUROPE AND TO FUND THE GENETIC TESTING WORK OF FRANCES SMITH. FRANCES SMITH PROVIDES FREQUENT REPORTS ABOUT THE GENETIC TESTING WORK.
IRS990ScheduleF/SupplementalInformationDetail/FormAndLineReferenceDesc0SCHEDULE F, PAGE 1, PART I, LINE 2
IRS990ScheduleF/Total501c3OrgCnt01
IRS990ScheduleF/TransferToForeignCorpInd0true
IRS990ScheduleG/AgrmtProfFundraisingActyInd0true
IRS990ScheduleG/AllStatesCd0All States
IRS990ScheduleG/FundraiserActivityInfoGrp/FundraiserControlOfFundsInd0false
IRS990ScheduleG/FundraiserActivityInfoGrp/NetToOrganizationAmt0-19970
IRS990ScheduleG/FundraiserActivityInfoGrp/PersonNm0THE RAYVAN GROUP
IRS990ScheduleG/FundraiserActivityInfoGrp/RetainedByContractorAmt019970
IRS990ScheduleG/FundraiserActivityInfoGrp/USAddress/AddressLine1Txt01709 N ASTER STREET
IRS990ScheduleG/FundraiserActivityInfoGrp/USAddress/CityNm0TEMPE
IRS990ScheduleG/FundraiserActivityInfoGrp/USAddress/StateAbbreviationCd0AZ
IRS990ScheduleG/FundraiserActivityInfoGrp/USAddress/ZIPCd085281
IRS990ScheduleG/SolicitationOfNonGovtGrantsInd0X
IRS990ScheduleG/TotalNetToOrganizationAmt0-19970
IRS990ScheduleG/TotalRetainedByContractorsAmt019970
IRS990/ScheduleJRequiredInd0false
IRS990/ScheduleORequiredInd0true
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0JANICE SCHWARTZ MARY SCHWARTZ ED FORMER ED DAUGHTER-IN-LAW/MOTHER-IN-LAW
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1THE BOARD OF DIRECTORS REVIEWS A DRAFT OF THE FORM 990 BEFORE THE FORM IS FILED. A COPY OF THE FINALIZED TAX RETURN IS PROVIDED TO THE BOARD OF DIRECTORS EACH YEAR AFTER THE RETURN IS FILED.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2THE ORGANIZATION HAS A FORMAL CONFLICT OF INTEREST POLICY. THIS POLICY REQUIRES ANNUAL WRITTEN DISCLOSURE OF POTENTIAL CONFLICTS OF INTEREST BY ALL BOARD MEMBERS AND MANAGEMENT. CONFLICT OF INTEREST FORMS ARE REVIEWED ANNUALLY AT LEAST ANNUALLY BY THE EXECUTIVE DIRECTOR AND BOARD CHAIR. IF A CONFLICT IS DETERMINED TO EXIST, BOARD MEMBERS ARE RECUSED FROM VOTING ON TOPICS RELATED TO THE CONFLICT.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3MINNESOTA, MISSOURI, NEW JERSEY, NEW MEXICO, NEW YORK, NORTH CAROLINA, OHIO, OREGON, PENNSYLVANIA, RHODE ISLAND, SOUTH CAROLINA, TENNESSEE, UTAH, VIRGINIA, WASHINGTON, WEST VIRGINIA, WISCONSIN
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON WRITTEN REQUEST.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5PROFESSIONAL SERVICES 45,669 5,670 0
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt6INVESTMENT FEES -7,792 INVESTMENT FEES 7,792
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PAGE 6, PART VI, LINE 2
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PAGE 6, PART VI, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PAGE 6, PART VI, LINE 12C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PAGE 6, PART VI, LINE 17
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PAGE 6, PART VI, LINE 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc5FORM 990, PART IX, LINE 11G
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc6FORM 990, PART XI, LINE 9
IRS990/SchoolOperatingInd0false
IRS990/SignificantChangeInd0false
IRS990/SignificantNewProgramSrvcInd0false
IRS990/StatesWhereCopyOfReturnIsFldCd0AR
IRS990/StatesWhereCopyOfReturnIsFldCd1CA
IRS990/StatesWhereCopyOfReturnIsFldCd2CO
IRS990/StatesWhereCopyOfReturnIsFldCd3CT
IRS990/StatesWhereCopyOfReturnIsFldCd4DC
IRS990/StatesWhereCopyOfReturnIsFldCd5FL
IRS990/StatesWhereCopyOfReturnIsFldCd6GA
IRS990/StatesWhereCopyOfReturnIsFldCd7IL
IRS990/StatesWhereCopyOfReturnIsFldCd8KS
IRS990/StatesWhereCopyOfReturnIsFldCd9LA
IRS990/StatesWhereCopyOfReturnIsFldCd10MD
IRS990/StatesWhereCopyOfReturnIsFldCd11MA
IRS990/StatesWhereCopyOfReturnIsFldCd12MI
IRS990/StatesWhereCopyOfReturnIsFldCd13MN
IRS990/StatesWhereCopyOfReturnIsFldCd14MO
IRS990/StatesWhereCopyOfReturnIsFldCd15NJ
IRS990/StatesWhereCopyOfReturnIsFldCd16NM
IRS990/StatesWhereCopyOfReturnIsFldCd17NY
IRS990/StatesWhereCopyOfReturnIsFldCd18NC
IRS990/StatesWhereCopyOfReturnIsFldCd19OH
IRS990/StatesWhereCopyOfReturnIsFldCd20OR
IRS990/StatesWhereCopyOfReturnIsFldCd21PA
IRS990/StatesWhereCopyOfReturnIsFldCd22RI
IRS990/StatesWhereCopyOfReturnIsFldCd23SC
IRS990/StatesWhereCopyOfReturnIsFldCd24TN
IRS990/StatesWhereCopyOfReturnIsFldCd25UT
IRS990/StatesWhereCopyOfReturnIsFldCd26VA

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