TY 2020 Form 990

- TIN:

SCHEDULE A
(Form 990 or 990EZ)

Department of the Treasury
Internal Revenue Service

Public Charity Status and Public Support

Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
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Attach to Form 990 or Form 990-EZ.
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Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2020

Open to Public
Inspection

Name of the organization

PACHYONYCHIA CONGENITA FUND

Employer identification number

68-0567493

Part I

Reason for Public Charity Status (All organizations must complete this part.) See instructions.

The organization is not a private foundation because it is: (For lines 1 through 12, check only one box.)

A church, convention of churches, or association of churches described in section 170(b)(1)(A)(i).

A school described in section 170(b)(1)(A)(ii). (Attach Schedule E (Form 990 or 990-EZ).)

A hospital or a cooperative hospital service organization described in section 170(b)(1)(A)(iii).

A medical research organization operated in conjunction with a hospital described in section 170(b)(1)(A)(iii). Enter the hospital's name, city, and state:

An organization operated for the benefit of a college or university owned or operated by a governmental unit described in section 170(b)(1)(A)(iv). (Complete Part II.)

A federal, state, or local government or governmental unit described in section 170(b)(1)(A)(v).

An organization that normally receives a substantial part of its support from a governmental unit or from the general public described in section 170(b)(1)(A)(vi). (Complete Part II.)

A community trust described in section 170(b)(1)(A)(vi). (Complete Part II.)

An agricultural research organization described in 170(b)(1)(A)(ix) operated in conjunction with a land-grant college or university or a non-land grant college of agriculture. See instructions. Enter the name, city, and state of the college or university:

An organization that normally receives: (1) more than 331/3% of its support from contributions, membership fees, and gross receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 331/3% of its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)

An organization organized and operated exclusively to test for public safety. See section 509(a)(4).

An organization organized and operated exclusively for the benefit of, to perform the functions of, or to carry out the purposes of one or more publicly supported organizations described in section 509(a)(1) or section 509(a)(2). See section 509(a)(3). Check the box in lines 12a through 12d that describes the type of supporting organization and complete lines 12e, 12f, and 12g.

Type I. A supporting organization operated, supervised, or controlled by its supported organization(s), typically by giving the supported organization(s) the power to regularly appoint or elect a majority of the directors or trustees of the supporting organization. You must complete Part IV, Sections A and B.

Type II. A supporting organization supervised or controlled in connection with its supported organization(s), by having control or management of the supporting organization vested in the same persons that control or manage the supported organization(s). You must complete Part IV, Sections A and C.

Type III functionally integrated. A supporting organization operated in connection with, and functionally integrated with, its supported organization(s) (see instructions). You must complete Part IV, Sections A, D, and E.

Type III non-functionally integrated. A supporting organization operated in connection with its supported organization(s) that is not functionally integrated. The organization generally must satisfy a distribution requirement and an attentiveness requirement (see instructions). You must complete Part IV, Sections A and D, and Part V.

Check this box if the organization received a written determination from the IRS that it is a Type I, Type II, Type III functionally integrated, or Type III non-functionally integrated supporting organization.

Enter the number of supported organizations ...............................

Provide the following information about the supported organization(s).

(i) Name of supported organization	(ii) EIN	(iv) Is the organization listed in your governing document?		(v) Amount of monetary support (see instructions)	(vi) Amount of other support (see instructions)
(i) Name of supported organization	(ii) EIN	Yes	No	(v) Amount of monetary support (see instructions)	(vi) Amount of other support (see instructions)


Total

For Paperwork Reduction Act Notice, see the Instructions for
Form 990 or 990-EZ.

Cat. No. 11285F

Schedule A (Form 990 or 990-EZ) 2020

Page 2

Part II

Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 of Part I or if the organization failed to qualify under Part III. If the organization failed to qualify under the tests listed below, please complete Part III.)

Section A. Public Support

Calendar year (or fiscal year beginning in)		(a) 2016	(b) 2017	(c) 2018	(d) 2019	(e) 2020	(f) Total
1	Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") ..	719,507	199,950	800,723	419,420	557,174	2,696,774
2	Tax revenues levied for the organization's benefit and either paid to or expended on its behalf....
3	The value of services or facilities furnished by a governmental unit to the organization without charge..
4	Total. Add lines 1 through 3	719,507	199,950	800,723	419,420	557,174	2,696,774
5	The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f)..						1,896,539
6	Public support. Subtract line 5 from line 4.						800,235

Section B. Total Support

Calendar year (or fiscal year beginning in)		(a) 2016	(b) 2017	(c) 2018	(d) 2019	(e) 2020	(f) Total
7	Amounts from line 4..	719,507	199,950	800,723	419,420	557,174	2,696,774
8	Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources...	25,645	34,420	39,054	44,883	71,463	215,465
9	Net income from unrelated business activities, whether or not the business is regularly carried on..	2,302					2,302
10	Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.)..					218	218
11	Total support. Add lines 7 through 10						2,914,759

Gross receipts from related activities, etc. (see instructions) ..................

18,355

First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here........................................ right arrow

Section C. Computation of Public Support Percentage

Public support percentage for 2020 (line 6, column (f) divided by line 11, column (f)) .........

27.450 %

Public support percentage for 2019 Schedule A, Part II, line 14 ...............

28.110 %

16a

33 1/3% support test—2020. If the organization did not check the box on line 13, and line 14 is 33 1/3% or more, check this box
and stop here. The organization qualifies as a publicly supported organization ....................... right arrow

33 1/3% support test—2019. If the organization did not check a box on line 13 or 16a, and line 15 is 33 1/3% or more, check this
box and stop here. The organization qualifies as a publicly supported organization ..................... right arrow

17a

10%-facts-and-circumstances test—2020. If the organization did not check a box on line 13, 16a, or 16b, and line 14
is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain
in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported
organization ..................................................... right arrow

10%-facts-and-circumstances test—2019. If the organization did not check a box on line 13, 16a, 16b, or 17a, and line
15 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here.
Explain in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly
supported organization ................................................ right arrow

Private foundation. If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions ..................................................... right arrow

Schedule A (Form 990 or 990-EZ) 2020

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Part III

Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 10 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)

Section A. Public Support

Calendar year (or fiscal year beginning in)		(a) 2016	(b) 2017	(c) 2018	(d) 2019	(e) 2020	(f) Total
1	Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .
2	Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose
3	Gross receipts from activities that are not an unrelated trade or business under section 513 .....
4	Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...
5	The value of services or facilities furnished by a governmental unit to the organization without charge
6	Total. Add lines 1 through 5
7a	Amounts included on lines 1, 2, and 3 received from disqualified persons
b	Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.
c	Add lines 7a and 7b..
8	Public support. (Subtract line 7c from line 6.)

Section B. Total Support

Calendar year (or fiscal year beginning in)		(a) 2016	(b) 2017	(c) 2018	(d) 2019	(e) 2020	(f) Total
9	Amounts from line 6...
10a	Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..
b	Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.
c	Add lines 10a and 10b.
11	Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on.
12	Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) ..
13	Total support. (Add lines 9, 10c, 11, and 12.)..

First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization,
check this box and stop here............................................. right arrow

Section C. Computation of Public Support Percentage

Public support percentage for 2020 (line 8, column (f) divided by line 13, column (f)) .........

Public support percentage from 2019 Schedule A, Part III, line 15 ...............

Section D. Computation of Investment Income Percentage

Investment income percentage for 2020 (line 10c, column (f) divided by line 13, column (f)) ......

Investment income percentage from 2019 Schedule A, Part III, line 17 .............

19a

331/3% support tests—2020. If the organization did not check the box on line 14, and line 15 is more than 33 1/3%, and line 17 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ....... right arrow

33 1/3% support tests—2019. If the organization did not check a box on line 14 or line 19a, and line 16 is more than 33 1/3% and line 18 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization .... right arrow

Private foundation. If the organization did not check a box on line 14, 19a, or 19b, check this box and see instructions .... right arrow

Schedule A (Form 990 or 990-EZ) 2020

Page 4

Part IV

Supporting Organizations

(Complete only if you checked a box on line 12 of Part I. If you checked box 12a, of Part I, complete Sections A and B. If you checked box 12b, of Part I, complete Sections A and C. If you checked box 12c, of Part I, complete Sections A, D, and E. If you checked box12d, of Part I, complete Sections A and D, and complete Part V.)

Section A. All Supporting Organizations

Yes

Are all of the organization’s supported organizations listed by name in the organization’s governing documents?
If "No," describe in Part VI how the supported organizations are designated. If designated by class or purpose,
describe the designation. If historic and continuing relationship, explain.

Did the organization have any supported organization that does not have an IRS determination of status under section 509(a)(1) or (2)? If "Yes," explain in Part VI how the organization determined that the supported organization was described in section 509(a)(1) or (2).

Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer lines 3b and 3c below.

Did the organization confirm that each supported organization qualified under section 501(c)(4), (5), or (6) and satisfied the public support tests under section 509(a)(2)? If "Yes," describe in Part VI when and how the organization made the determination.

Did the organization ensure that all support to such organizations was used exclusively for section 170(c)(2)(B) purposes? If "Yes," explain in Part VI what controls the organization put in place to ensure such use.

Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked box 12a or 12b in Part I, answer lines 4b and 4c below.

Did the organization have ultimate control and discretion in deciding whether to make grants to the foreign supported organization? If “Yes,” describe in Part VI how the organization had such control and discretion despite being controlled or supervised by or in connection with its supported organizations.

Did the organization support any foreign supported organization that does not have an IRS determination under sections 501(c)(3) and 509(a)(1) or (2)? If “Yes,” explain in Part VI what controls the organization used to ensure that all support to the foreign supported organization was used exclusively for section 170(c)(2)(B) purposes.

Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer lines 5b and 5c below (if applicable). Also, provide detail in Part VI, including (i) the names and EIN numbers of the supported organizations added, substituted, or removed; (ii) the reasons for each such action; (iii) the authority under the organization's organizing document authorizing such action; and (iv) how the action was accomplished (such as by amendment to the organizing document).

Type I or Type II only. Was any added or substituted supported organization part of a class already designated in the organization's organizing document?

Substitutions only. Was the substitution the result of an event beyond the organization's control?

Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (i) its supported organizations, (ii) individuals that are part of the charitable class benefited by one or more of its supported organizations, or (iii) other supporting organizations that also support or benefit one or more of the filing organization’s supported organizations? If “Yes,” provide detail in Part VI.

Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in section 4958(c)(3)(C)), a family member of a substantial contributor, or a 35% controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990 or 990-EZ) .

Did the organization make a loan to a disqualified person (as defined in section 4958) not described in line 7? If “Yes,” complete Part I of Schedule L (Form 990 or 990-EZ).

Was the organization controlled directly or indirectly at any time during the tax year by one or more disqualified persons, as defined in section 4946 (other than foundation managers and organizations described in section 509(a)(1) or (2))? If “Yes,” provide detail in Part VI.

Did one or more disqualified persons (as defined in line 9a) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.

Did a disqualified person (as defined in line 9a) have an ownership interest in, or derive any personal benefit from, assets in which the supporting organization also had an interest? If “Yes,” provide detail in Part VI.

10a

Was the organization subject to the excess business holdings rules of section 4943 because of section 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer line 10b below.

10a

Did the organization have any excess business holdings in the tax year? (Use Schedule C, Form 4720, to determine whether the organization had excess business holdings).

10b

Schedule A (Form 990 or 990-EZ) 2020

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Part IV

Supporting Organizations (continued)

Yes

Has the organization accepted a gift or contribution from any of the following persons?

A person who directly or indirectly controls, either alone or together with persons described in lines 11b and 11c below, the governing body of a supported organization?

11a

A family member of a person described in 11a above?

11b

A 35% controlled entity of a person described in line 11a or 11b above? If “Yes” to 11a, 11b, or 11c, provide detail in Part VI.

11c

Section B. Type I Supporting Organizations

Yes

Did the officers, directors, trustees, or membership of one or more supported organizations have the power to regularly appoint or elect at least a majority of the organization’s directors or trustees at all times during the tax year? If “No,” describe in Part VI how the supported organization(s) effectively operated, supervised, or controlled the organization’s activities. If the organization had more than one supported organization, describe how the powers to appoint and/or remove directors or trustees were allocated among the supported organizations and what conditions or restrictions, if any, applied to such powers during the tax year.

Did the organization operate for the benefit of any supported organization other than the supported organization(s) that operated, supervised, or controlled the supporting organization? If “Yes,” explain in Part VI how providing such benefit carried out the purposes of the supported organization(s) that operated, supervised or controlled the supporting organization.

Section C. Type II Supporting Organizations

Yes

Were a majority of the organization’s directors or trustees during the tax year also a majority of the directors or trustees of each of the organization’s supported organization(s)? If “No,” describe in Part VI how control or management of the supporting organization was vested in the same persons that controlled or managed the supported organization(s).

Section D. All Type III Supporting Organizations

Yes

Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (i) a written notice describing the type and amount of support provided during the prior tax year, (ii) a copy of the Form 990 that was most recently filed as of the date of notification, and (iii) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?

Were any of the organization’s officers, directors, or trustees either (i) appointed or elected by the supported organization(s) or (ii) serving on the governing body of a supported organization? If "No," explain in Part VI how the organization maintained a close and continuous working relationship with the supported organization(s).

By reason of the relationship described in line 2 above, did the organization’s supported organizations have a significant voice in the organization’s investment policies and in directing the use of the organization’s income or assets at all times during the tax year? If "Yes," describe in Part VI the role the organization’s supported organizations played in this regard.

Section E. Type III Functionally-Integrated Supporting Organizations

Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):

The organization satisfied the Activities Test. Complete line 2 below.

The organization is the parent of each of its supported organizations. Complete line 3 below.

The organization supported a governmental entity. Describe in Part VI how you supported a government entity (see instructions)

Activities Test. Answer lines 2a and 2b below.

Yes

Did substantially all of the organization’s activities during the tax year directly further the exempt purposes of the supported organization(s) to which the organization was responsive? If "Yes," then in Part VI identify those supported organizations and explain how these activities directly furthered their exempt purposes, how the organization was responsive to those supported organizations, and how the organization determined that these activities constituted substantially all of its activities.

Did the activities described in line 2a, above constitute activities that, but for the organization’s involvement, one or more of the organization’s supported organization(s) would have been engaged in? If "Yes," explain in Part VI the reasons for the organization’s position that its supported organization(s) would have engaged in these activities but for the organization’s involvement.

Parent of Supported Organizations. Answer lines 3a and 3b below.

Did the organization have the power to regularly appoint or elect a majority of the officers, directors, or trustees of each of the supported organizations?If "Yes" or "No", provide details in Part VI.

Did the organization exercise a substantial degree of direction over the policies, programs and activities of each of its supported organizations? If "Yes," describe in Part VI. the role played by the organization in this regard.

Schedule A (Form 990 or 990-EZ) 2020

Page 6

Part V

Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations

Check here if the organization satisfied the Integral Part Test as a qualifying trust on Nov. 20, 1970 (explain in Part VI). See instructions. All other Type III non-functionally integrated supporting organizations must complete Sections A through E.

	Section A - Adjusted Net Income		(A) Prior Year	(B) Current Year (optional)
1	Net short-term capital gain	1
2	Recoveries of prior-year distributions	2
3	Other gross income (see instructions)	3
4	Add lines 1 through 3	4
5	Depreciation and depletion	5
6	Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions)	6
7	Other expenses (see instructions)	7
8	Adjusted Net Income (subtract lines 5, 6 and 7 from line 4)	8

	Section B - Minimum Asset Amount		(A) Prior Year	(B) Current Year (optional)
1	Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year):	1
a	Average monthly value of securities	1a
b	Average monthly cash balances	1b
c	Fair market value of other non-exempt-use assets	1c
d	Total (add lines 1a, 1b, and 1c)	1d
e	Discount claimed for blockage or other factors (explain in detail in Part VI):
2	Acquisition indebtedness applicable to non-exempt use assets	2
3	Subtract line 2 from line 1d	3
4	Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions).	4
5	Net value of non-exempt-use assets (subtract line 4 from line 3)	5
6	Multiply line 5 by 0.035	6
7	Recoveries of prior-year distributions	7
8	Minimum Asset Amount (add line 7 to line 6)	8

	Section C - Distributable Amount		Current Year
1	Adjusted net income for prior year (from Section A, line 8, Column A)	1
2	Enter 85% of line 1	2
3	Minimum asset amount for prior year (from Section B, line 8, Column A)	3
4	Enter greater of line 2 or line 3	4
5	Income tax imposed in prior year	5
6	Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions)	6

Check here if the current year is the organization's first as a non-functionally-integrated Type III supporting organization (see instructions)

Schedule A (Form 990 or 990-EZ) 2020

Page 7

Part V

Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations(continued)

Section D - Distributions		Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes	1
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity	2
3 Administrative expenses paid to accomplish exempt purposes of supported organizations	3
4 Amounts paid to acquire exempt-use assets	4
5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI)	5
6 Other distributions (describe in Part VI). See instructions	6
7Total annual distributions. Add lines 1 through 6.	7
8 Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions	8
9 Distributable amount for 2020 from Section C, line 6	9
10 Line 8 amount divided by Line 9 amount	10

Section E - Distribution Allocations (see instructions)		(i) Excess Distributions	(ii) Underdistributions Pre-2020	(iii) Distributable Amount for 2020
1 Distributable amount for 2020 from Section C, line 6
2 Underdistributions, if any, for years prior to 2019 (reasonable cause required-- explain in Part VI). See instructions.
3 Excess distributions carryover, if any, to 2020:
a From 2015.......
b From 2016.......
c From 2017.......
d From 2018.......
e From 2019.......
fTotal of lines 3a through e
g Applied to underdistributions of prior years
h Applied to 2020 distributable amount
i Carryover from 2015 not applied (see instructions)
j Remainder. Subtract lines 3g, 3h, and 3i from line 3f.
4Distributions for 2020 from Section D, line 7:
$
a Applied to underdistributions of prior years
b Applied to 2020 distributable amount
c Remainder. Subtract lines 4a and 4b from line 4.
5 Remaining underdistributions for years prior to 2020, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions.
6 Remaining underdistributions for 2020. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions.
7 Excess distributions carryover to 2021. Add lines 3j and 4c.
8 Breakdown of line 7:
a Excess from 2016.....
b Excess from 2017.....
c Excess from 2018.....
d Excess from 2019.....
e Excess from 2020.....

Schedule A (Form 990 or 990-EZ) (2020)

Schedule A (Form 990 or 990-EZ) 2020

Page 8

Part VI

Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; Part III, line 12; Part IV, Section A, lines 1, 2, 3b, 3c, 4b, 4c, 5a, 6, 9a, 9b, 9c, 11a, 11b, and 11c; Part IV, Section B, lines 1 and 2; Part IV, Section C, line 1; Part IV, Section D, lines 2 and 3; Part IV, Section E, lines 1c, 2a, 2b, 3a and 3b; Part V, line 1; Part V, Section B, line 1e; Part V Section D, lines 5, 6, and 8; and Part V, Section E, lines 2, 5, and 6. Also complete this part for any additional information. (See instructions).

Facts And Circumstances Test
THE 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 27.45% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2016 TO 2020. 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 24 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 TECHNOLOGIES AND 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 THEIR HOME COUNTRIES. A LIST OF PARTICIPANTS CAN BE PROVIDED IF NEEDED. BEGINNING WITH THE 2004 SYMPOSIUM, THE ORGANIZATION HAS SPONSORED AN ANNUAL SCIENTIFIC MEETING EACH YEAR. THE ORGANIZATION ALSO PROVIDES EXPERTISE DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC BY RESPONDING TO DOZENS OF TELEPHONE, MAIL, AND INTERNET INQUIRIES EACH WEEK AT NO CHARGE FROM PUBLIC HEALTH OFFICIALS, PRACTITIONERS, AND MEMBERS OF THE GENERAL PUBLIC. IN MANY CASES, MEMBERS OF THE MEDICAL AND SCIENTIFIC ADVISORY BOARD WILL PROVIDE RESPONSES WHEN SPECIFIC SCIENTIFIC OR MEDICAL OPINIONS ARE NEEDED. THE IPCC HAS ORGANIZED A STEERING COMMITTEE TO DIRECT EFFORTS OF THE IPCC AND THREE WORKING TEAMS, INCLUDING (1) A RESEARCH TEAM CONDUCTING BASIC AND TRANSLATIONAL RESEARCH, (2) A DIAGNOSTICS AND GENETICS TEAM, AND (3) A PHYSICIANS NETWORK. EACH OF THESE TEAMS ACTIVELY PROVIDE PUBLIC SERVICE TO THOSE WITH PC AND MANY OTHER RELATED SKIN DISORDERS. (B) THE FACT THAT AN ORGANIZATION IS AN EDUCATION OR RESEARCH INSTITUTION WHICH REGULARLY PUBLISHES SCHOLARLY STUDIES...WILL ALSO BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." FROM 2004 TO 2016, THE ORGANIZATION'S BOARD MEMBERS AND VOLUNTEERS HAVE CONTRIBUTED TO OVER 90 SCHOLARLY STUDIES RELATED TO PC AND PC RESEARCH. PUBLICATIONS CAN BE PROVIDED FOR REVIEW IF NEEDED. MANY ARE AVAILABLE ONLINE AT HTTP://WWW.PACHYONYCHIA.ORG/RESEARCH-ARTICLES/. ALSO, IPCC NEWSLETTERS HAVE BEEN PUBLISHED EVERY QUARTER SINCE 2004. IN ADDITION, NUMEROUS PRESENTATIONS ON PC HAVE BEEN MADE BY BOARD MEMBERS AND VOLUNTEERS IN SCIENTIFIC MEETINGS AROUND THE WORLD. (C) SIMILARLY, THE FOLLOWING FACTORS WILL ALSO BE CONSIDERED EVIDENCE THAT AN ORGANIZATION IS "PUBLICLY SUPPORTED": (1) THE PARTICIPATION IN, OR SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. SEE (A) ABOVE FOR A DESCRIPTION OF THE ORGANIZATION'S INTERNATIONAL SCIENTIFIC CONFERENCE FOR EXAMPLES OF PARTICIPATION IN, AND SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. IN ADDITION, THE ORGANIZATION HAS SEVERAL OTHER ACTIVITIES WHICH DEMONSTRATE THIS BROAD PUBLIC SUPPORT: 1. PATIENT MEETINGS HAVE BEEN HELD IN THE FOLLOWING LOCATIONS: BOSTON, MA (2019) SALT LAKE CITY, UT (2004 & 2009, 2017) - HOSTED BY UNIVERSITY OF UTAH KANSAS CITY, MO (2004) - HOSTED BY F.I.R.S.T DUNDEE, SCOTLAND (2004 AND 2006) - HOSTED BY UNIVERSITY OF DUNDEE NIAGRA FALLS, ONTARIO (2005) PARK CITY, UT (2007) PITLOCHRY, SCOTLAND (2008) EDINBURGH, SCOTLAND (2010, 2012, 2014, 2016) PARIS, FRANCE (2010, 2012, 2014) PHILADELPHIA, PA (2011) SANTA CRUZ, CA (2013) NEWARK, NJ (2015) LONDON, ENGLAND (2018) (CO-SPONSORED BY PC PROJECT EUROPE) MORE THAN A DOZEN PHYSICIANS AND SCIENTISTS VOLUNTEER THEIR TIME AND PAY THEIR OWN EXPENSES TO ATTEND THE PATIENT SUPPORT MEETINGS. PATIENTS AND MANY OF THEIR FAMILY MEMBER ATTEND SUPPORT MEETINGS. THE MEETING LOCATION ALTERNATES EACH YEAR BETWEEN EUROPE AND THE UNITED STATES TO GIVE PATIENTS BROAD ACCESS TO INFORMATION AND SUPPORT. 2. THE INTERNATIONAL PC RESEARCH REGISTRY HAS RECEIVED INSTITUTIONAL REVIEW BOARD APPROVAL THROUGH THE WESTERN INSTITUTIONAL REVIEW BOARD (STUDY 2004/0468/1057496). IRB APPROVAL HAS BEEN RENEWED EACH YEAR. THIS IS THE ONLY ACTIVE REGISTRY FOR PC PATIENTS IN THE WORLD. THERE ARE NEARLY 2,200 PATIENTS REGISTERED. PC PATIENTS ARE REGISTERED FROM OVER 60 COUNTRIES. 1.170A-9(E)(3)(VII) ADDITIONAL FACTORS PERTINENT TO MEMBERSHIP. THE ORGANIZATION IS NOT A MEMBERSHIP ORGANIZATION.

Facts And Circumstances Test

THE 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 27.45% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2016 TO 2020. 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 24 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 TECHNOLOGIES AND 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 THEIR HOME COUNTRIES. A LIST OF PARTICIPANTS CAN BE PROVIDED IF NEEDED. BEGINNING WITH THE 2004 SYMPOSIUM, THE ORGANIZATION HAS SPONSORED AN ANNUAL SCIENTIFIC MEETING EACH YEAR. THE ORGANIZATION ALSO PROVIDES EXPERTISE DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC BY RESPONDING TO DOZENS OF TELEPHONE, MAIL, AND INTERNET INQUIRIES EACH WEEK AT NO CHARGE FROM PUBLIC HEALTH OFFICIALS, PRACTITIONERS, AND MEMBERS OF THE GENERAL PUBLIC. IN MANY CASES, MEMBERS OF THE MEDICAL AND SCIENTIFIC ADVISORY BOARD WILL PROVIDE RESPONSES WHEN SPECIFIC SCIENTIFIC OR MEDICAL OPINIONS ARE NEEDED. THE IPCC HAS ORGANIZED A STEERING COMMITTEE TO DIRECT EFFORTS OF THE IPCC AND THREE WORKING TEAMS, INCLUDING (1) A RESEARCH TEAM CONDUCTING BASIC AND TRANSLATIONAL RESEARCH, (2) A DIAGNOSTICS AND GENETICS TEAM, AND (3) A PHYSICIANS NETWORK. EACH OF THESE TEAMS ACTIVELY PROVIDE PUBLIC SERVICE TO THOSE WITH PC AND MANY OTHER RELATED SKIN DISORDERS. (B) THE FACT THAT AN ORGANIZATION IS AN EDUCATION OR RESEARCH INSTITUTION WHICH REGULARLY PUBLISHES SCHOLARLY STUDIES...WILL ALSO BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." FROM 2004 TO 2016, THE ORGANIZATION'S BOARD MEMBERS AND VOLUNTEERS HAVE CONTRIBUTED TO OVER 90 SCHOLARLY STUDIES RELATED TO PC AND PC RESEARCH. PUBLICATIONS CAN BE PROVIDED FOR REVIEW IF NEEDED. MANY ARE AVAILABLE ONLINE AT HTTP://WWW.PACHYONYCHIA.ORG/RESEARCH-ARTICLES/. ALSO, IPCC NEWSLETTERS HAVE BEEN PUBLISHED EVERY QUARTER SINCE 2004. IN ADDITION, NUMEROUS PRESENTATIONS ON PC HAVE BEEN MADE BY BOARD MEMBERS AND VOLUNTEERS IN SCIENTIFIC MEETINGS AROUND THE WORLD. (C) SIMILARLY, THE FOLLOWING FACTORS WILL ALSO BE CONSIDERED EVIDENCE THAT AN ORGANIZATION IS "PUBLICLY SUPPORTED": (1) THE PARTICIPATION IN, OR SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. SEE (A) ABOVE FOR A DESCRIPTION OF THE ORGANIZATION'S INTERNATIONAL SCIENTIFIC CONFERENCE FOR EXAMPLES OF PARTICIPATION IN, AND SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. IN ADDITION, THE ORGANIZATION HAS SEVERAL OTHER ACTIVITIES WHICH DEMONSTRATE THIS BROAD PUBLIC SUPPORT: 1. PATIENT MEETINGS HAVE BEEN HELD IN THE FOLLOWING LOCATIONS: BOSTON, MA (2019) SALT LAKE CITY, UT (2004 & 2009, 2017) - HOSTED BY UNIVERSITY OF UTAH KANSAS CITY, MO (2004) - HOSTED BY F.I.R.S.T DUNDEE, SCOTLAND (2004 AND 2006) - HOSTED BY UNIVERSITY OF DUNDEE NIAGRA FALLS, ONTARIO (2005) PARK CITY, UT (2007) PITLOCHRY, SCOTLAND (2008) EDINBURGH, SCOTLAND (2010, 2012, 2014, 2016) PARIS, FRANCE (2010, 2012, 2014) PHILADELPHIA, PA (2011) SANTA CRUZ, CA (2013) NEWARK, NJ (2015) LONDON, ENGLAND (2018) (CO-SPONSORED BY PC PROJECT EUROPE) MORE THAN A DOZEN PHYSICIANS AND SCIENTISTS VOLUNTEER THEIR TIME AND PAY THEIR OWN EXPENSES TO ATTEND THE PATIENT SUPPORT MEETINGS. PATIENTS AND MANY OF THEIR FAMILY MEMBER ATTEND SUPPORT MEETINGS. THE MEETING LOCATION ALTERNATES EACH YEAR BETWEEN EUROPE AND THE UNITED STATES TO GIVE PATIENTS BROAD ACCESS TO INFORMATION AND SUPPORT. 2. THE INTERNATIONAL PC RESEARCH REGISTRY HAS RECEIVED INSTITUTIONAL REVIEW BOARD APPROVAL THROUGH THE WESTERN INSTITUTIONAL REVIEW BOARD (STUDY 2004/0468/1057496). IRB APPROVAL HAS BEEN RENEWED EACH YEAR. THIS IS THE ONLY ACTIVE REGISTRY FOR PC PATIENTS IN THE WORLD. THERE ARE NEARLY 2,200 PATIENTS REGISTERED. PC PATIENTS ARE REGISTERED FROM OVER 60 COUNTRIES. 1.170A-9(E)(3)(VII) ADDITIONAL FACTORS PERTINENT TO MEMBERSHIP. THE ORGANIZATION IS NOT A MEMBERSHIP ORGANIZATION.

Return Reference	Explanation
PART II, LINE 10	OTHER INCOME 218
PART II, LINE 17A	THE 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 27.45% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2016 TO 2020. 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 24 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 TECHNOLOGIES AND 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 THEIR HOME COUNTRIES. A LIST OF PARTICIPANTS CAN BE PROVIDED IF NEEDED. BEGINNING WITH THE 2004 SYMPOSIUM, THE ORGANIZATION HAS SPONSORED AN ANNUAL SCIENTIFIC MEETING EACH YEAR. THE ORGANIZATION ALSO PROVIDES EXPERTISE DIRECTLY FOR THE BENEFIT OF THE GENERAL PUBLIC BY RESPONDING TO DOZENS OF TELEPHONE, MAIL, AND INTERNET INQUIRIES EACH WEEK AT NO CHARGE FROM PUBLIC HEALTH OFFICIALS, PRACTITIONERS, AND MEMBERS OF THE GENERAL PUBLIC. IN MANY CASES, MEMBERS OF THE MEDICAL AND SCIENTIFIC ADVISORY BOARD WILL PROVIDE RESPONSES WHEN SPECIFIC SCIENTIFIC OR MEDICAL OPINIONS ARE NEEDED. THE IPCC HAS ORGANIZED A STEERING COMMITTEE TO DIRECT EFFORTS OF THE IPCC AND THREE WORKING TEAMS, INCLUDING (1) A RESEARCH TEAM CONDUCTING BASIC AND TRANSLATIONAL RESEARCH, (2) A DIAGNOSTICS AND GENETICS TEAM, AND (3) A PHYSICIANS NETWORK. EACH OF THESE TEAMS ACTIVELY PROVIDE PUBLIC SERVICE TO THOSE WITH PC AND MANY OTHER RELATED SKIN DISORDERS. (B) THE FACT THAT AN ORGANIZATION IS AN EDUCATION OR RESEARCH INSTITUTION WHICH REGULARLY PUBLISHES SCHOLARLY STUDIES...WILL ALSO BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." FROM 2004 TO 2016, THE ORGANIZATION'S BOARD MEMBERS AND VOLUNTEERS HAVE CONTRIBUTED TO OVER 90 SCHOLARLY STUDIES RELATED TO PC AND PC RESEARCH. PUBLICATIONS CAN BE PROVIDED FOR REVIEW IF NEEDED. MANY ARE AVAILABLE ONLINE AT HTTP://WWW.PACHYONYCHIA.ORG/RESEARCH-ARTICLES/. ALSO, IPCC NEWSLETTERS HAVE BEEN PUBLISHED EVERY QUARTER SINCE 2004. IN ADDITION, NUMEROUS PRESENTATIONS ON PC HAVE BEEN MADE BY BOARD MEMBERS AND VOLUNTEERS IN SCIENTIFIC MEETINGS AROUND THE WORLD. (C) SIMILARLY, THE FOLLOWING FACTORS WILL ALSO BE CONSIDERED EVIDENCE THAT AN ORGANIZATION IS "PUBLICLY SUPPORTED": (1) THE PARTICIPATION IN, OR SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. SEE (A) ABOVE FOR A DESCRIPTION OF THE ORGANIZATION'S INTERNATIONAL SCIENTIFIC CONFERENCE FOR EXAMPLES OF PARTICIPATION IN, AND SPONSORSHIP OF, PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS. IN ADDITION, THE ORGANIZATION HAS SEVERAL OTHER ACTIVITIES WHICH DEMONSTRATE THIS BROAD PUBLIC SUPPORT: 1. PATIENT MEETINGS HAVE BEEN HELD IN THE FOLLOWING LOCATIONS: BOSTON, MA (2019) SALT LAKE CITY, UT (2004 & 2009, 2017) - HOSTED BY UNIVERSITY OF UTAH KANSAS CITY, MO (2004) - HOSTED BY F.I.R.S.T DUNDEE, SCOTLAND (2004 AND 2006) - HOSTED BY UNIVERSITY OF DUNDEE NIAGRA FALLS, ONTARIO (2005) PARK CITY, UT (2007) PITLOCHRY, SCOTLAND (2008) EDINBURGH, SCOTLAND (2010, 2012, 2014, 2016) PARIS, FRANCE (2010, 2012, 2014) PHILADELPHIA, PA (2011) SANTA CRUZ, CA (2013) NEWARK, NJ (2015) LONDON, ENGLAND (2018) (CO-SPONSORED BY PC PROJECT EUROPE) MORE THAN A DOZEN PHYSICIANS AND SCIENTISTS VOLUNTEER THEIR TIME AND PAY THEIR OWN EXPENSES TO ATTEND THE PATIENT SUPPORT MEETINGS. PATIENTS AND MANY OF THEIR FAMILY MEMBER ATTEND SUPPORT MEETINGS. THE MEETING LOCATION ALTERNATES EACH YEAR BETWEEN EUROPE AND THE UNITED STATES TO GIVE PATIENTS BROAD ACCESS TO INFORMATION AND SUPPORT. 2. THE INTERNATIONAL PC RESEARCH REGISTRY HAS RECEIVED INSTITUTIONAL REVIEW BOARD APPROVAL THROUGH THE WESTERN INSTITUTIONAL REVIEW BOARD (STUDY 2004/0468/1057496). IRB APPROVAL HAS BEEN RENEWED EACH YEAR. THIS IS THE ONLY ACTIVE REGISTRY FOR PC PATIENTS IN THE WORLD. THERE ARE NEARLY 2,200 PATIENTS REGISTERED. PC PATIENTS ARE REGISTERED FROM OVER 60 COUNTRIES. 1.170A-9(E)(3)(VII) ADDITIONAL FACTORS PERTINENT TO MEMBERSHIP. THE ORGANIZATION IS NOT A MEMBERSHIP ORGANIZATION.

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Explanation

PART II, LINE 10

OTHER INCOME 218

PART II, LINE 17A

Schedule A (Form 990 or 990-EZ) 2020

Additional Data

Software ID:
Software Version:

- TIN:

Schedule B
(Form 990, 990-EZ,
or 990-PF)

Department of the Treasury
Internal Revenue Service

Schedule of Contributors

Attach to Form 990, 990-EZ, or 990-PF.

Go to www.irs.gov/Form990 for the latest information.

OMB No. 1545-0047

2020

Name of the organization

PACHYONYCHIA CONGENITA FUND

Employer identification number

68-0567493

Organization type (check one):

Filers of:

Section:

Form 990 or 990-EZ

501(c)( ) (enter number) organization

4947(a)(1) nonexempt charitable trust not treated as a private foundation

527 political organization

Form 990-PF

501(c)(3) exempt private foundation

4947(a)(1) nonexempt charitable trust treated as a private foundation

501(c)(3) taxable private foundation

Check if your organization is covered by the General Rule or a Special Rule.
Note: Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.

General Rule

For an organization filing Form 990, 990-EZ, or 990-PF that received, during the year, contributions totaling $5,000 or more (in money or other property) from any one contributor. Complete Parts I and II. See instructions for determining a contributor's total contributions.

Special Rules

For an organization described in section 501(c)(3) filing Form 990 or 990-EZ that met the 33¹/3% support test of the regulations
under sections 509(a)(1) and 170(b)(1)(A)(vi), that checked Schedule A (Form 990 or 990-EZ), Part II, line 13, 16a, or 16b, and that received from any one contributor, during the year, total contributions of the greater of (1) $5,000 or (2) 2% of the amount on (i) Form 990, Part VIII, line 1h, or (ii) Form 990-EZ, line 1. Complete Parts I and II.

For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, total contributions of more than $1,000 exclusively for religious, charitable, scientific, literary, or educational purposes, or for the prevention of cruelty to children or animals. Complete Parts I, II, and III.

For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, contributions exclusively for religious, charitable, etc., purposes, but no such contributions totaled more than $1,000. If this box is checked, enter here the total contributions that were received during the year for an exclusively religious, charitable, etc., purpose. Don't complete any of the parts unless the General Rule applies to this organization because it received nonexclusively religious, charitable, etc., contributions totaling $5,000 or more during the year ......... Arrow Bullet

Caution: An organization that isn't covered by the General Rule and/or the Special Rules doesn't file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its Form 990-EZ
or on its Form 990PF, Part I, line 2, to certify that it doesn't meet the filing requirements of Schedule B (Form 990,
990-EZ, or 990-PF).

For Paperwork Reduction Act Notice, see the Instructions
for Form 990, 990-EZ, or 990-PF.

Cat. No. 30613XSchedule B (Form 990, 990-EZ, or 990-PF) (2020)

Schedule B (Form 990, 990-EZ, or 990-PF) (2020) Page 2

Name of organization PACHYONYCHIA CONGENITA FUND

Part I Contributors	Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
RESTRICTED	,	$ RESTRICTED	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2020)

Schedule B (Form 990, 990-EZ, or 990-PF) (2020)

Page 3

Name of organization PACHYONYCHIA CONGENITA FUND		Employer identification number 68-0567493

Part II	Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
Schedule B (Form 990, 990-EZ, or 990-PF) (2020)

Schedule B (Form 990, 990-EZ, or 990-PF) (2020)

Page 4


Name of organization PACHYONYCHIA CONGENITA FUND			Employer identification number 68-0567493
Part III Exclusively religious, charitable, etc., contributions to organizations described in section 501(c)(7), (8), or (10) that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) $ Use duplicate copies of Part III if additional space is needed.

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

Schedule B (Form 990, 990-EZ, or 990-PF) (2020)

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE C
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service

Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527

SchCMd Bullet

Complete if the organization is described below. SchCMd Bullet

Attach to Form 990 or Form 990-EZ.
SchCMd Bullet

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2020

Open to Public
Inspection

If the organization answered "Yes" on Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet

Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet

Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet

Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" on Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet

Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet

Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" on Form 990, Part IV, Line 5 (Proxy Tax) (see separate instructions) or Form 990-EZ, Part V, line 35c (Proxy Tax) (see separate instructions), then
Round Bullet

Section 501(c)(4), (5), or (6) organizations: Complete Part III.

Name of the organization

PACHYONYCHIA CONGENITA FUND

Employer identification number

68-0567493

Part I-A

Complete if the organization is exempt under section 501(c) or is a section 527 organization.

Provide a description of the organization’s direct and indirect political campaign activities in Part IV (see instructions for definition of “political campaign activities")

Political campaign activity expenditures (see instructions) .................................................................... SchCMd Bullet

Volunteer hours for political campaign activities (see instructions) ..................................................................

Part I-B

Complete if the organization is exempt under section 501(c)(3).

Enter the amount of any excise tax incurred by the organization under section 4955 ................................ SchCMd Bullet

Enter the amount of any excise tax incurred by organization managers under section 4955 ....................... SchCMd Bullet

If the organization incurred a section 4955 tax, did it file Form 4720 for this year? .........................................

Yes No

Was a correction made? ......................................................................................................................

Yes No

If "Yes," describe in Part IV.

Part I-C

Complete if the organization is exempt under section 501(c), except section 501(c)(3).

Enter the amount directly expended by the filing organization for section 527 exempt function activities ..... SchCMd Bullet

Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................ SchCMd Bullet

Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b........... SchCMd Bullet

Did the filing organization file Form 1120-POL for this year? ...................................................................

Yes No

Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.

(a) Name	(b) Address	(c) EIN	(d) Amount paid from filing organization's funds. If none, enter -0-.	(e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.
1
2
3
4
5
6

For Paperwork Reduction Act Notice, see the instructions for Form 990 or 990-EZ.

Cat. No. 50084S

Schedule C (Form 990 or 990-EZ) 2020

Page 2

Part II-A

Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).

A Check SchCMd Bullet

if the filing organization belongs to an affiliated group (and list in Part IV each affiliated group member's name, address, EIN, expenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet

if the filing organization checked box A and "limited control" provisions apply.

Limits on Lobbying Expenditures (The term "expenditures" means amounts paid or incurred.)		(b) Affiliated group totals
1a	Total lobbying expenditures to influence public opinion (grass roots lobbying) ......................
b	Total lobbying expenditures to influence a legislative body (direct lobbying) ........................
c	Total lobbying expenditures (add lines 1a and 1b) ............................................................
d	Other exempt purpose expenditures ...............................................................................
e	Total exempt purpose expenditures (add lines 1c and 1d) ..................................................
f	Lobbying nontaxable amount. Enter the amount from the following table in both columns.
	If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
	Not over $500,00020% of the amount on line 1e.
	Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
	Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
	Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
	Over $17,000,000$1,000,000.

g	Grassroots nontaxable amount (enter 25% of line 1f) .................................................
h	Subtract line 1g from line 1a. If zero or less, enter -0-. ................................................
i	Subtract line 1f from line 1c. If zero or less, enter -0-. ................................................
j	If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting section 4911 tax for this year? ...................................................................................................................	Yes No

4-Year Averaging Period Under Section 501(h) (Some organizations that made a section 501(h) election do not have to complete all of the five columns below. See the separate instructions for lines 2a through 2f.)
Lobbying Expenditures During 4-Year Averaging Period
	Calendar year (or fiscal year beginning in)	(a) 2017	(b) 2018	(c) 2019	(d) 2020	(e) Total

2a	Lobbying nontaxable amount

b	Lobbying ceiling amount (150% of line 2a, column(e))

c	Total lobbying expenditures

d	Grassroots nontaxable amount

e	Grassroots ceiling amount (150% of line 2d, column (e))

f	Grassroots lobbying expenditures

Schedule C (Form 990 or 990-EZ) 2020

Page 3

Part II-B

Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).

For each "Yes" response on lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.

(a)

Yes|No

(b)

Amount

During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:

Volunteers? ...........................................................................................................

Yes

Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ........

Media advertisements? ...................................................................................................

Mailings to members, legislators, or the public? .............................................................................

Publications, or published or broadcast statements? ...........................................................

Grants to other organizations for lobbying purposes? ..........................................................

Direct contact with legislators, their staffs, government officials, or a legislative body? .......................

Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ..................

Other activities? ...................................................................................................................

Total. Add lines 1c through 1i ....................................................................................................

Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....

If "Yes," enter the amount of any tax incurred under section 4912 ...........................................

If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ...................

If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ........................

Part III-A

Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).

Yes

Were substantially all (90% or more) dues received nondeductible by members? ...............................................

Did the organization make only in-house lobbying expenditures of $2,000 or less? ............................................

Did the organization agree to carry over lobbying and political expenditures from the prior year? .................................

Part III-B

Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."

Dues, assessments and similar amounts from members ......................................................................

Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid).

Current year .............................................................................................................................

Carryover from last year ............................................................................................................

Total ...........................................................................................................................................

Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .

If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ......................................................................................................................

Taxable amount of lobbying and political expenditures (see instructions) .........................................

Part IV

Supplemental Information

Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, lines 1 and 2 (see instructions), and Part ll-B, line 1. Also, complete this part for any additional information.

Return Reference	Explanation
SCHEDULE C, PART II-B, LINE 1	A VOLUNTEER BOARD MEMBER REPRESENTED THE ORGANIZATION AT THE AMERICAN ACADEMY OF DERMATOLOGY'S ANNUAL LEGISLATIVE CONFERENCE, WHICH WAS HELD VIRTUALLY. THE MEETING BROUGHT TOGETHER MORE THAN 200 DERMATOLOGISTS AND REPRESENTATIVES OF PATIENT ADVOCACY ORGANIZATIONS TO LOBBY CONGRESS ON ISSUES AFFECTING DERMATOLOGY AND PATIENTS. IN ADDITION TO RAISING AWARENESS OF PACHYONYCHIA CONGENITA AMONG MEMBERS OF CONGRESS, DOCTORS, AND PATIENT GROUPS, THE BOARD MEMBER PRESSED LEGISLATORS TO PRIORITIZE FUNDING FOR RARE DISEASES.

Return Reference

Explanation

SCHEDULE C, PART II-B, LINE 1

A VOLUNTEER BOARD MEMBER REPRESENTED THE ORGANIZATION AT THE AMERICAN ACADEMY OF DERMATOLOGY'S ANNUAL LEGISLATIVE CONFERENCE, WHICH WAS HELD VIRTUALLY. THE MEETING BROUGHT TOGETHER MORE THAN 200 DERMATOLOGISTS AND REPRESENTATIVES OF PATIENT ADVOCACY ORGANIZATIONS TO LOBBY CONGRESS ON ISSUES AFFECTING DERMATOLOGY AND PATIENTS. IN ADDITION TO RAISING AWARENESS OF PACHYONYCHIA CONGENITA AMONG MEMBERS OF CONGRESS, DOCTORS, AND PATIENT GROUPS, THE BOARD MEMBER PRESSED LEGISLATORS TO PRIORITIZE FUNDING FOR RARE DISEASES.

Schedule C (Form 990 or 990EZ) 2020

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE D
(Form 990)

Department of the Treasury
Internal Revenue Service

Supplemental Financial Statements

Complete if the organization answered "Yes," on Form 990,
Part IV, line 6, 7, 8, 9, 10, 11a, 11b, 11c, 11d, 11e, 11f, 12a, or 12b.
SchDMd Bullet

Attach to Form 990.
SchDMd Bullet

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2020

Open to Public Inspection

Name of the organization

PACHYONYCHIA CONGENITA FUND

Employer identification number

68-0567493

Part I

Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" on Form 990, Part IV, line 6.

		(a) Donor advised funds	(b) Funds and other accounts
1	Total number at end of year .........
2	Aggregate value of contributions to (during year)
3	Aggregate value of grants from (during year)
4	Aggregate value at end of year ........

Did the organization inform all donors and donor advisors in writing that the assets held in donor advised funds are the organization’s property, subject to the organization’s exclusive legal control? ............

Yes No

Did the organization inform all grantees, donors, and donor advisors in writing that grant funds can be used only for charitable purposes and not for the benefit of the donor or donor advisor, or for any other purpose conferring impermissible private benefit? ...................................

Yes No

Part II

Conservation Easements.
Complete if the organization answered "Yes" on Form 990, Part IV, line 7.

Purpose(s) of conservation easements held by the organization (check all that apply).

Preservation of land for public use (e.g., recreation or education) Preservation of an historically important land area

Protection of natural habitat Preservation of a certified historic structure

Preservation of open space

Complete lines 2a through 2d if the organization held a qualified conservation contribution in the form of a conservation easement on the last day of the tax year.


a	Total number of conservation easements ......................	2a
b	Total acreage restricted by conservation easements ....................	2b
c	Number of conservation easements on a certified historic structure included in (a) .....	2c
d	Number of conservation easements included in (c) acquired after 7/25/06, and not on a historic structure listed in the National Register ...	2d

Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during the
tax year SchDMd Bullet

Number of states where property subject to conservation easement is located SchDMd Bullet

Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and enforcement of the conservation easements it holds? ............

Yes No

Staff and volunteer hours devoted to monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet

Amount of expenses incurred in monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet

Does each conservation easement reported on line 2(d) above satisfy the requirements of section 170(h)(4)(B)(i) and section 170(h)(4)(B)(ii)? .............................

Yes No

In Part XIII, describe how the organization reports conservation easements in its revenue and expense statement, and
balance sheet, and include, if applicable, the text of the footnote to the organization’s financial statements that describes
the organization’s accounting for conservation easements.

Part III

Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets.
Complete if the organization answered "Yes" on Form 990, Part IV, line 8.

If the organization elected, as permitted under FASB ASC 958, not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIII, the text of the footnote to its financial statements that describes these items.

If the organization elected, as permitted under FASB ASC 958, to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items:

(i)

Revenue included on Form 990, Part VIII, line 1 ......................... SchDMd Bullet

(ii)

Assets included in Form 990, Part X ............................... SchDMd Bullet

If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the
following amounts required to be reported under FASB ASC 958 relating to these items:

Revenue included on Form 990, Part VIII, line 1 .......................... SchDMd Bullet

Assets included in Form 990, Part X ............................... SchDMd Bullet

For Paperwork Reduction Act Notice, see the Instructions for Form 990.

Cat. No. 52283D

Schedule D (Form 990) 2020

Page 2

Part III

Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)

Using the organization’s acquisition, accession, and other records, check any of the following that are a significant use of its collection items (check all that apply):

Public exhibition

Loan or exchange programs

Scholarly research

Other

Preservation for future generations

Provide a description of the organization’s collections and explain how they further the organization’s exempt purpose in
Part XIII.

During the year, did the organization solicit or receive donations of art, historical treasures or other similar
assets to be sold to raise funds rather than to be maintained as part of the organization’s collection?...

Yes No

Part IV

Escrow and Custodial Arrangements. Complete if the organization answered "Yes" on Form 990, Part IV, line 9, or reported an amount on Form 990, Part X, line 21.

Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not
included on Form 990, Part X? ....................................

Yes No


b	If "Yes," explain the arrangement in Part XIII and complete the following table:		Amount
c	Beginning balance .............................	1c
d	Additions during the year ............................	1d
e	Distributions during the year ..........................	1e
f	Ending balance ................................	1f

Did the organization include an amount on Form 990, Part X, line 21, for escrow or custodial account liability? ...

Yes No

If "Yes," explain the arrangement in Part XIII. Check here if the explanation has been provided in Part XIII ....

Part V

Endowment Funds.
Complete if the organization answered "Yes" on Form 990, Part IV, line 10.

		(a) Current year	(b) Prior year	(c) Two years back	(d) Three years back	(e) Four years back

1a	Beginning of year balance ....
b	Contributions ...
c	Net investment earnings, gains, and losses
d	Grants or scholarships ...
e	Other expenditures for facilities and programs ...
f	Administrative expenses ....
g	End of year balance ......

Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:

Board designated or quasi-endowment SchDMd Bullet

Permanent endowment SchDMd Bullet

Term endowment SchDMd Bullet

The percentages on lines 2a, 2b, and 2c should equal 100%.

Are there endowment funds not in the possession of the organization that are held and administered for the
organization by:

Yes

(i) Unrelated organizations .......................

3a(i)

(ii) Related organizations .......................

3a(ii)

If "Yes" on 3a(ii), are the related organizations listed as required on Schedule R? .........

Describe in Part XIII the intended uses of the organization's endowment funds.

Part VI

Land, Buildings, and Equipment.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11a. See Form 990, Part X, line 10.

Description of property		(a) Cost or other basis (investment)	(b) Cost or other basis (other)	(c) Accumulated depreciation	(d) Book value

1a	Land .....
b	Buildings ....
c	Leasehold improvements
d	Equipment ....	19,475	15,855	3,620
e	Other .....
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).)..				3,620

Schedule D (Form 990) 2020

Page 3

Part VII

Investments - Other Securities.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11b. See Form 990, Part X, line 12.

(a) Description of security or category (including name of security)	(b) Book value	(c) Method of valuation: Cost or end-of-year market value
(1) Financial derivatives.........
(2) Closely-held equity interests........
(3)Other
(B)
(C)
(D)
(E)
(F)
(G)
(H)
(I)
Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)

Part VIII

Investments - Program Related. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11c. See Form 990, Part X, line 13.

(a) Description of investment	(b) Book value	(c) Method of valuation: Cost or end-of-year market value

(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
(10)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)

Part IX

Other Assets.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11d. See Form 990, Part X, line 15.

(a) Description				(b) Book value

(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
(10)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........

Part X

Other Liabilities.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11e or 11f. See Form 990, Part X, line 25.

1.(a) Description of liability	(b) Book value
(1) Federal income taxes

(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)
2. Liability for uncertain tax positions. In Part XIII, provide the text of the footnote to the organization's financial statements that reports the organization's liability for uncertain tax positions under FIN 48 (ASC 740). Check here if the text of the footnote has been provided in Part XIII

Schedule D (Form 990) 2020

Page 4

Part XI Reconciliation of Revenue per Audited Financial Statements With Revenue per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1	Total revenue, gains, and other support per audited financial statements .......			1	949,807
2	Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a	Net unrealized gains (losses) on investments ....	2a	145,495
b	Donated services and use of facilities .........	2b	176,200
c	Recoveries of prior year grants ...........	2c
d	Other (Describe in Part XIII.) ............	2d
e	Add lines 2a through 2d .....................			2e	321,695
3	Subtract line 2e from line 1..................			3	628,112
4	Amounts included on Form 990, Part VIII, line 12, but not on line 1:
a	Investment expenses not included on Form 990, Part VIII, line 7b .	4a	13,124
b	Other (Describe in Part XIII.) ...........	4b
c	Add lines 4a and 4b....................			4c	13,124
5	Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ......			5	641,236

Part XII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1	Total expenses and losses per audited financial statements ...........			1	352,400
2	Amounts included on line 1 but not on Form 990, Part IX, line 25:
a	Donated services and use of facilities .........	2a	176,200
b	Prior year adjustments ............	2b
c	Other losses ................	2c
d	Other (Describe in Part XIII.) ............	2d
e	Add lines 2a through 2d....................			2e	176,200
3	Subtract line 2e from line 1...................			3	176,200
4	Amounts included on Form 990, Part IX, line 25, but not on line 1:
a	Investment expenses not included on Form 990, Part VIII, line 7b ..	4a	13,124
b	Other (Describe in Part XIII.) ............	4b
c	Add lines 4a and 4b.....................			4c	13,124
5	Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ......			5	189,324

Part XIII

Supplemental Information

Provide the descriptions required for Part II, lines 3, 5, and 9; Part III, lines 1a and 4; Part lV, lines 1b and 2b; Part V, line 4; Part X, line 2; Part XI, lines 2d and 4b; and Part XII, lines 2d and 4b. Also complete this part to provide any additional information.

Return Reference

Explanation

SCHEDULE D, PAGE 3, PART X

THE ORGANIZATION HAS BEEN RECOGNIZED BY THE INTERNAL REVENUE SERVICE (IRS) AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3), QUALIFYING FOR THE CHARITABLE CONTRIBUTION DEDUCTION UNDER SECTION 170(B)(1)(A)(VI), AND HAS BEEN DETERMINED NOT TO BE A PRIVATE FOUNDATION UNDER SECTION 509(A). THE ORGANIZATION IS ANNUALLY REQUIRED TO FILE A RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX (FORM 990) AND IS SUBJECT TO INCOME TAX ON NET INCOME THAT IS DERIVED FROM BUSINESS ACTIVITIES THAT ARE UNRELATED TO THEIR EXEMPT PURPOSES. MANAGEMENT HAS DETERMINED THAT THE ORGANIZATION IS NOT SUBJECT TO UNRELATED BUSINESS INCOME TAX. MANAGEMENT BELIEVES THAT THE ORGANIZATION HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN IN ITS ANNUAL FILING AND DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. THE ORGANIZATION'S FORMS 990 ARE NO LONGER SUBJECT TO TAX EXAMINATION FOR YEARS BEFORE 2017.

Schedule D (Form 990) 2020

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE O
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service

Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ or to provide any additional information.
MediumBullet

Attach to Form 990 or 990-EZ.
MediumBullet

Go to www.irs.gov/Form990 for the latest information.

OMB No. 1545-0047

2020

Open to Public
Inspection

Name of the organization

PACHYONYCHIA CONGENITA FUND

Employer identification number

68-0567493

Return Reference	Explanation
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.
FORM 990, PART IX, LINE 11G	CLERICAN AND ADMINISTRATIVE 1,412 5,896 0 GENETIC TESTING 25,365 0 0 PROFESSIONAL SERVICE 2,933 0 0 TOTAL 29,710 5,896 0

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.

Cat. No. 51056K

Schedule O (Form 990 or 990-EZ) 2020

Additional Data

Software ID:
Software Version:

1	Briefly describe the organization’s mission or most significant activities: THE ORGANIZATION'S MISSION IS TO FIGHT FOR A CURE FOR THE PACHYONYCHIA CONGENITA DISEASE, CONNECT AND HELP PATIENTS, AND EMPOWER RESEARCH.
2	Check this box
3	Number of voting members of the governing body (Part VI, line 1a) ........	3	7
4	Number of independent voting members of the governing body (Part VI, line 1b) .....	4	7
5	Total number of individuals employed in calendar year 2020 (Part V, line 2a) ......	5	1
6	Total number of volunteers (estimate if necessary) .............	6	20
7a	Total unrelated business revenue from Part VIII, column (C), line 12 ........	7a	0
b	Net unrelated business taxable income from Form 990-T, line 39 .........	7b

		Prior Year	Current Year
8	Contributions and grants (Part VIII, line 1h) .........	419,420	557,174
9	Program service revenue (Part VIII, line 2g) .........	6,306	0
10	Investment income (Part VIII, column (A), lines 3, 4, and 7d ) ....	44,297	83,844
11	Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e)		218
12	Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)	470,023	641,236
13	Grants and similar amounts paid (Part IX, column (A), lines 1–3 )...	14,500	0
14	Benefits paid to or for members (Part IX, column (A), line 4).....		0
15	Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10)	73,975	73,975
16a	Professional fundraising fees (Part IX, column (A), line 11e) .....	2,995	0
b	Total fundraising expenses (Part IX, column (D), line 25) 11,369
17	Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e)....	209,606	115,349
18	Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25)	301,076	189,324
19	Revenue less expenses. Subtract line 18 from line 12.......	168,947	451,912
		Beginning of Current Year	End of Year
20	Total assets (Part X, line 16).............	2,144,710	2,737,401
21	Total liabilities (Part X, line 26).............	6,687	1,971
22	Net assets or fund balances. Subtract line 21 from line 20.....	2,138,023	2,735,430

Sign Here

	Signature of officer	Date

	Type or print name and title


4a	(Code: ) (Expenses $ 33,799 including grants of $ ) (Revenue $ )
	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.

4b	(Code: ) (Expenses $ 113,050 including grants of $ ) (Revenue $ )
	IPCRR 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.

4c	(Code: ) (Expenses $ 1,913 including grants of $ ) (Revenue $ )
	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.

4d	Other program services (Describe in Schedule O.)
	(Expenses $ including grants of $ ) (Revenue $ )
4e	Total program service expenses148,762

(A) Name and title	(B) Average hours per week (list any hours for related organizations below dotted line)	(C) Position (do not check more than one box, unless person is both an officer and a director/trustee)		(D) Reportable compensation from the organization (W-2/1099-MISC)	(E) Reportable compensation from related organizations (W-2/1099-MISC)	(F) Estimated amount of other compensation from the organization and related organizations
(A) Name and title
(1) JASON HUNTER CPA...................................................................... TREASURER	3.00 .................	X	X	0	0	0
(2) BARBARA FEINSTEIN...................................................................... SECRETARY	1.00 .................	X	X	0	0	0
(3) KAY DEE HOLMES...................................................................... BOARD MEMBER	1.00 .................	X		0	0	0
(4) C DAVID HANSEN MD...................................................................... BOARD MEMBER	10.00 .................	X		0	0	0
(5) JACK PADOVANO...................................................................... CHAIR	6.00 .................	X	X	0	0	0
(6) JAMES RITTLE...................................................................... BOARD MEMBER	2.00 .................	X		0	0	0
(7) JANICE N SCHWARTZ...................................................................... EXECUTIVE DI	70.00 .................	X	X	0	0	0

1b	Sub-Total................
c	Total from continuation sheets to Part VII, Section A....
d	Total (add lines 1b and 1c)...........

(A) Name and business address	(B) Description of services	(C) Compensation





2 Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization

1a	Federated campaigns..		1a
b	Membership dues..		1b
c	Fundraising events..		1c
d	Related organizations		1d
e	Government grants (contributions)		1e	15,600

f	All other contributions, gifts, grants, and similar amounts not included above		1f	541,574

g	Noncash contributions included in lines 1a - 1f:$		1g

h Total. Add lines 1a-1f.......		557,174

		Business Code
2a
b
c
d
e
f	All other program service revenue.
g	Total. Add lines 2a–2f .....

3 Investment income (including dividends, interest, and othersimilar amounts) ......			71,463			71,463
4 Income from investment of tax-exempt bond proceeds
5 Royalties...........
		(ii) Personal	(i) Real
6a	Gross rents			6a
b	Less: rental expenses			6b
c	Rental income or (loss)			6c
d	Net rental income or (loss).......
		(ii) Other	(i) Securities
7a	Gross amount from sales of assets other than inventory		449,114	7a
b	Less: cost or other basis and sales expenses		436,733	7b
c	Gain or (loss)		12,381	7c
d	Net gain or (loss).........			12,381	12,381
8a	Gross income from fundraising events (not including $ of contributions reported on line 1c). See Part IV, line 18 ....
			8a
b	Less: direct expenses ...		8b
c	Net income or (loss) from fundraising events..
9a	Gross income from gaming activities. See Part IV, line 19 ...
			9a
b	Less: direct expenses ...		9b
c	Net income or (loss) from gaming activities..
10a	Gross sales of inventory, less returns and allowances ..
			10a
b	Less: cost of goods sold ..		10b
c	Net income or (loss) from sales of inventory..
Business Code			Miscellaneous Revenue
11a	OTHER		900099	218	218
b
c
d	All other revenue ....
e	Total. Add lines 11a–11d ......			218
12	Total revenue. See instructions.....			641,236	12,599		71,463

1	Grants and other assistance to domestic organizations and domestic governments. See Part IV, line 21 ....
2	Grants and other assistance to domestic individuals. See Part IV, line 22 ...........
3	Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See Part IV, lines 15 and 16. .............
4	Benefits paid to or for members .......
5	Compensation of current officers, directors, trustees, and key employees ...........
6	Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) .........
7	Other salaries and wages........	68,718	68,154	282	282
8	Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) ....
9	Other employee benefits .......
10	Payroll taxes ...........	5,257	5,213	22	22
11	Fees for services (non-employees):
a	Management ......
b	Legal .........
c	Accounting ...........	6,300		6,300
d	Lobbying ...........
e	Professional fundraising services. See Part IV, line 17
f	Investment management fees ......	13,124		13,124
g	Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O)	35,606	29,710	5,896
12	Advertising and promotion ....
13	Office expenses .......	9,547	8,690	558	299
14	Information technology ......	32,005	30,429	1,007	569
15	Royalties ..
16	Occupancy ...........	4,800	3,120	1,200	480
17	Travel ............	1,477	1,477
18	Payments of travel or entertainment expenses for any federal, state, or local public officials .
19	Conferences, conventions, and meetings ....
20	Interest ...........
21	Payments to affiliates .......
22	Depreciation, depletion, and amortization ..	670	664	3	3
23	Insurance ...	589		589
24	Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a	LICENSE AND DUES	9,045	423	143	8,479
b	BANK AND MERCHANT FEES	1,375	109	69	1,197
c	CATERING	508	470		38
d	MISCELLANEOUS	303	303
e	All other expenses
25	Total functional expenses. Add lines 1 through 24e	189,324	148,762	29,193	11,369
26	Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here if following SOP 98-2 (ASC 958-720).

1	Cash–non-interest-bearing ........			186,360	1	596,640
2	Savings and temporary cash investments .........				2
3	Pledges and grants receivable, net ......			18,808	3
4	Accounts receivable, net .............				4
5	Loans and other receivables from any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .......
					5
6	Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), and persons described in section 4958(c)(3)(B) ...
					6
7	Notes and loans receivable, net ...........				7
8	Inventories for sale or use ............				8
9	Prepaid expenses and deferred charges ......			20,864	9	4,584
10a	Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D	10a	19,475
b	Less: accumulated depreciation	10b	15,855	2,129	10c	3,620
11	Investments—publicly traded securities .			1,916,549	11	2,132,557
12	Investments—other securities. See Part IV, line 11 .....				12
13	Investments—program-related. See Part IV, line 11 ..				13
14	Intangible assets ...............				14
15	Other assets. See Part IV, line 11 ...........				15
16	Total assets. Add lines 1 through 15 (must equal line 33)...			2,144,710	16	2,737,401

17	Accounts payable and accrued expenses .....	6,687	17	1,971
18	Grants payable ...		18
19	Deferred revenue .........		19
20	Tax-exempt bond liabilities .........		20
21	Escrow or custodial account liability. Complete Part IV of Schedule D		21
22	Loans and other payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .........
			22
23	Secured mortgages and notes payable to unrelated third parties ..		23
24	Unsecured notes and loans payable to unrelated third parties ..		24
25	Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17 - 24). Complete Part X of Schedule D		25
26	Total liabilities. Add lines 17 through 25..	6,687	26	1,971

	Organizations that follow FASB ASC 958, check here and complete lines 27, 28, 32, and 33.
27	Net assets without donor restrictions ..........	2,138,023	27	2,735,430
28	Net assets with donor restrictions ...........		28
	Organizations that do not follow FASB ASC 958, check here and complete lines 29 through 33.
29	Capital stock or trust principal, or current funds .....		29
30	Paid-in or capital surplus, or land, building or equipment fund ...		30
31	Retained earnings, endowment, accumulated income, or other funds		31
32	Total net assets or fund balances ...........	2,138,023	32	2,735,430
33	Total liabilities and net assets/fund balances ........	2,144,710	33	2,737,401