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.
right arrow Attach to Form 990 or Form 990-EZ.
right arrow Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2014
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 11, check only one box.)
1
2
3
4


5
6
7
8
9
10
11
a
b
c
d
e
f
Enter the number of supported organizations ..............  

g
Provide the following information about the supported organization(s).
(i)Name of supported organization (ii) EIN (iii) Type of organization (described on lines 1- 9 above or IRC section (see instructions)) (iv) Is the organization listed in your governing document? (v) Amount of monetary support (see instructions) (vi) Amount of other support (see instructions)
Yes No
Total      

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990EZ.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2014
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Schedule A (Form 990 or 990-EZ) 2014
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 fails to qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .... 214,562 271,722 492,160 466,491 1,029,782 2,474,717
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 3 214,562 271,722 492,160 466,491 1,029,782 2,474,717
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).. 1,662,466
6 Public support. Subtract line 5 from line 4. 812,251
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (f) Total
7 Amounts from line 4.. 214,562 271,722 492,160 466,491 1,029,782 2,474,717
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... 199 61 107 127 28,970 29,464
9 Net income from unrelated business activities, whether or not the business is regularly carried on..            
10 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.)..         2,427 2,427
11 Total support Add lines 7 through 10. 2,506,608
12
12
19,981
13
First five 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
14
14
32.400 %
15
15
30.820 %
16a
b
17a
b
18
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) 2014
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Schedule A (Form 990 or 990-EZ) 2014
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 9 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) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (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) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (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.)..            
14
Section C. Computation of Public Support Percentage
15
15
 
16
16
 
Section D. Computation of Investment Income Percentage
17
17
 
18
18
 
19a
b
20
Schedule A (Form 990 or 990-EZ) 2014
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Schedule A (Form 990 or 990-EZ) 2014
Page 4
Part IV
Supporting Organizations
(Complete only if you checked a box on line 11 of Part I. If you checked 11a of Part I, complete Sections A and B. If you checked 11b of Part I, complete Sections A and C. If you checked 11c of Part I, complete Sections A, D, and E. If you checked 11d of Part I, complete Sections A and D, and complete Part V.)
Section A. All Supporting Organizations
Yes
No
1
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.
1
 
 
2
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).
2
 
 
3a
Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer (b) and (c) below.
3a
 
 
b
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.
3b
 
 
c
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.
3c
 
 
4a
Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked 11a or 11b in Part I, answer (b) and (c) below.
4a
 
 
b
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.
4b
 
 
c
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.
4c
 
 
5a
Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer (b) and (c) 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).
5a
 
 
b
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?
5b
 
 
c
Substitutions only. Was the substitution the result of an event beyond the organization's control?
5c
 
 
6
Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (a) its supported organizations; (b) individuals that are part of the charitable class benefited by one or more of its supported organizations; or (c) 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.
6
 
 
7
Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in IRC 4958(c)(3)(C)), a family member of a substantial contributor, or a 35-percent controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990) .
7
 
 
8
Did the organization make a loan to a disqualified person (as defined in section 4958) not described in line 7? If “Yes,” complete Part II of Schedule L (Form 990).
8
 
 
9a
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.
9a
 
 
b
Did one or more disqualified persons (as defined in line 9(a)) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.
9b
 
 
c
Did a disqualified person (as defined in line 9(a)) 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.
9c
 
 
10a
Was the organization subject to the excess business holdings rules of IRC 4943 because of IRC 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer b below.
10a
 
 
b
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) 2014
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Schedule A (Form 990 or 990-EZ) 2014
Page 5
Part IV
Supporting Organizations (continued)
Yes
No
11
Has the organization accepted a gift or contribution from any of the following persons?
a
A person who directly or indirectly controls, either alone or together with persons described in (b) and (c) below, the governing body of a supported organization?
11a
 
 
b
A family member of a person described in (a) above?
11b
 
 
c
A 35% controlled entity of a person described in (a) or (b) above? If “Yes” to a, b, or c, provide detail in Part VI.
11c
 
 
Section B. Type I Supporting Organizations
Yes
No
1
Did the 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.
1
 
 
2
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.
2
 
 
Section C. Type II Supporting Organizations
Yes
No
1
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).
1
 
 
Section D. All Type III Supporting Organizations
Yes
No
1
Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (1) a written notice describing the type and amount of support provided during the prior tax year, (2) a copy of the Form 990 that was most recently filed as of the date of notification, and (3) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?
1
 
 
2
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).
2
 
 
3
By reason of the relationship described in (2), 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.
3
 
 
Section E. Type III Functionally-Integrated Supporting Organizations
1
Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):
a
b
c
2
Activities Test. Answer (a) and (b) below.
Yes
No
a
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.
2a
 
 
b
Did the activities described in (a) 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.
2b
 
 
3
Parent of Supported Organizations. Answer (a) and (b) below.
a
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? Provide details in Part VI.
3a
 
 
b
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.
3b
 
 
Schedule A (Form 990 or 990-EZ) 2014
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Schedule A (Form 990 or 990-EZ) 2014
Page 6
Part V – Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations

1
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 1-1/2% 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 .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  
7
Schedule A (Form 990 or 990-EZ) 2014
Page 7

Schedule A (Form 990 or 990-EZ) 2014
Page 7
Section D - Distributions Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes  
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in
excess of income from activity		  
3 Administrative expenses paid to accomplish exempt purposes of supported organizations  
4 Amounts paid to acquire exempt-use assets  
5 Qualified set-aside amounts (prior IRS approval required)  
6 Other distributions (describe in Part VI). See instructions  
7Total annual distributions. Add lines 1 through 6.  
8 Distributions to attentive supported organizations to which the organization is responsive (provide
details in Part VI). See instructions		  
9 Distributable amount for 2014 from Section C, line 6  
10 Line 8 amount divided by Line 9 amount  

Section E - Distribution Allocations (see instructions) (i)
Excess Distributions 		(ii)
Underdistributions
Pre-2014 		(iii)
Distributable
Amount for 2014
1 Distributable amount for 2014 from Section C, line
6 		 
2 Underdistributions, if any, for years prior to 2014
(reasonable cause required--see instructions)		  
3 Excess distributions carryover, if any, to 2014:
a From 2009.......X
b From 2010.......X
c From 2011.......X
d From 2012.......X
e From 2013.......  
fTotal of lines 3a through e  
g Applied to underdistributions of prior years  
h Applied to 2014 distributable amount  
i Carryover from 2009 not applied (see
instructions)
j Remainder. Subtract lines 3g, 3h, and 3i from 3f.  
4Distributions for 2014 from Section D, line 7:
$  
a Applied to underdistributions of prior years  
b Applied to 2014 distributable amount  
c Remainder. Subtract lines 4a and 4b from 4.  
5 Remaining underdistributions for years prior to
2014, if any. Subtract lines 3g and 4a from line 2
(if amount greater than zero, see instructions)		  
6 Remaining underdistributions for 2014. Subtract
lines 3h and 4b from line 1 (if amount greater than
zero, see instructions)		  
7 Excess distributions carryover to 2015. Add lines
3j and 4c.		  
8 Breakdown of line 7:
a From 2010.......X
b From 2011.......X
c From 2012.......X
d From 2013.......  
e From 2014.......  
Schedule A (Form 990 or 990-EZ) (2014)
Page 8

Schedule A (Form 990 or 990-EZ) 2014
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 TAXPAYER 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 TAXPAYER'S PRIMARY GOALS HAVE BEEN (1)TO INTEREST LEADING SCIENTISTS AND PHYSICANS 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 CHARTIEIS ON A CONTINUOUS BASIS. AT NO TIME HAS PC PROJECT CONDUCTED ACTIVITIES WHICH SERVE THE PERSONAL OR PRIVATE INTEREST OF ITS FOUNDERS OR OTHER INSIDERS. THE TAXPAYER MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICIATION OF FUNDS. BROCHURES REQUESTING DONATIONS ARE WIDELY DISTRIBUTED AT SCIENTIFIC, PATIENT SUPPORT, AND PUBLIC EVENTS. THESE BROCHURES WERE ALSO DISTRIBUTED THROUGH DIRECT MAILINGS TO PERSONAL AND PROFESSIONAL CONTACTS. GRANT APPLICATIONS HAVE BEEN MADE TO FOUNDATIONS SUCH AS NFED, NORD, FDA/OOPD, NIH/NIAMS AND OTHERS. 1.170A-9(E)(3)(III) PERCENTAGE OF FINANCIAL SUPPORT. THE TAXPAYER RECEIVED 32.4% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2010 TO 2014. 1.170A-9(E)(3)(IV) SOURCES OF SUPPORT. THE TAXPAYER 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 TAXPAYER IN ITS EXEMPT PURPOSE. 1.170A-9(E)(3)(V) REPRESENTATIVE GOVERNING BODY. THE TAXPAYER 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 FULFILING ITS EXEMPT PURPOSE. 2. THE MEDICAL AND SCIENTIFIC ADVISORY BOARD IS A VOLUNTEER BOARD CONSISTING OF 15 PHYSICIANS AND SCIENTISTS WHO HAVE A SPECIALTY IN DETMATOLOGICAL RESEARCH AND GENETICS, WITH AN EMPHASIS ON KERATIN DISORDERS. SOME MEMBERS OF THIS BOARD ARE IN CONTACT DAILY WITH THE TAXPAYER REGARDING RESEARCH AND PATIENT CARE. MANY ARE IN CONTACT SEVERAL TIMES A MONTH. CONFERENCE CALLS ARE REGULARLY HELD 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 TRHOUGH VARIOUS SOCIAL MEDIA SUCH AS FACEBOOK TO PROVIDE PATIENT OUTREACH AND PATIENT-TO-PATIENT SUPPORT. 1.170A-9(E)(3)(VI) AVILABILITY 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...WILL BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." IN FEBRUARY 2004, THE TAXPAYER ORGANIZED THE FIRST INTERNATIONAL PC CONFERENCE IN WHICH 23 OF THE LEADING KERATIN SPECIALISTS ATTENDED INCLUDING MARIO CAPECCHI (WINNER OF 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 141 EXPERTS WHO ARE ACTIVE MEMBERS OF THE IPCC AND EACH HAS AGREED TO COLLABORATE AND SHARE REAGANTS 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 FOR REVIEW IF NEEDED. BEGINNING WITH THE 2004 SYMPOSIUM, THE TAXPAYER HAS SPONSORED AN ANUAL SCIENTIFIC MEETING EACH YEAR. THE TAXPAYER 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 OFFICALS, PRACTITIONERS IN THE FIELD, AND/OR MEMBERS OF THE GENERAL PUBLIC. IN MANY CASES, MEMBERS OF THE MEDICAL AND SCIENTIFIC ADVISORY BOARD PROVIDED RESPONSES WHEN SPECIFIC SCIENTIFIC OR MEDICAL OPINIONS WERE NEEDED. THE IPCC HAS 3 WORKING TEAMS (1) RESEARCH TEAM CONDUCTING BASIC AND TRANSLATIONAL RESEARCH (2) DIAGNOSTICS AND GENETICS TEAM (3) PHYSICIANS NETWORK. EACH OF THESE TEAMS ARE ACTIVELY PROVIDED 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 2014, THE TAXPAYER'S BOARD MEMBERS AND VOLUNTEERS HAVE CONTRIBUTED TO A NUMBER OF SCHOLARLY STUDIES RELATED TO PC AND PC RESEARCH. PUBLICATIONS CAN BE PROVIDED FOR REVIEW IF NEED AND MANY ARE ON-LINE AND AVAILABLE AT HTTP://WWW.PACHYONYCHIA.ORG/RESEARCH_ARTICLES.PHP . ALSO, IPCC NEWSLETTERS HAVE BEEN PUBLISHED EVERY QUARTER SINCE 2004. THE LATEST EDITION WAS DISTRIBUTED TO OVER 200 VIA E-MAIL AND MAIL.IN ADDITION, NUMEROUS PRESENTATIONS ON PC HAVE BEEN MADE BY BOARD MEMBERS AND VOLUNTEERS IN SCIENTIFIC MEETINGS IN ST LOUIS, MISSOURI; PHILADELPHIA, PENNSYLVANIA; LOS ANGELES, CALIFORNIA; SAN FRANCISCO, CALIFORNIA; WASHINGTON, DC; BUENOS AIRES, ARGENTINA; MAASTRICHT, THE NETHERLANDS;AND VARIOUS OTHER STATES & COUNTRIES. (C) SIMALARLY, 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 OFFICALS, OR CIVIC OR COMMUNITY LEADERS. PLEASE SEE (A) ABOVE FOR A DESCRIPTION OF THE TAXPAYER'S INTERNATIONAL SCIENTIFIC CONFERENCES FOR EXAMPLES OF PARTICIPATION IN, AND SPONSORSHIP OF PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICALS, OR CIVIC OR COMMUNITY LEADERS. IN ADDITION, THE TAXPAYER HAS SEVERAL OTHER ACTIVITIES WHICH DEMONSTRATE THIS BROAD PUBLIC SUPPORT: 1. PATIENT SUPPORT MEETINGS HAVE BEEN HELD IN SALT LAKE CITY, UTAH (2004 AND 2009); KANSAS CITY, MISSOURI (2004); DUNDEE, SCOTLAND (2004 AND 2006); NIAGRA FALLS, ONTARIO (2005); PARK CITY, UTAH (2007); PITLOCHRY, SCOTLAND (2008); EDINBURGH, SCOTLAND(2010, 2012, 2014); PARIS, FRANCE (2010 AND 2012); PHEONIX, AZ, PITTSBURG, PA (2011) AND SANTA CRUZ, CA (2013). MORE THAN A DOZEN PHYSICIANS AND SCIENTISTS VOLUNTEERED THEIR TIME AND PAID THEIR OWN EXPENSES TO ATTEND THE 2007 MEETING AND SIMILAR NUMBERS HAVE ATTENDED EACH MEETING. THERE WERE OVER 50 PC PATIENTS AND MANY OF THEIR FAMILY MEMBERS AT THE 2007 MEETING; AND ATTENDANCE HAS CONTINUED TO INCREASE SINCE. THE 2004 MEETING IN KANSASY CITY WAS HOSTED BY THE FOUNDATION FOR ICHTHYOSIS AND RELATED SKIN TYPES (F.I.R.S.T.). THE MEETING IN 2004, 2006, AND 2008 WERE HOSTED BY THE UNIVERSITY OF DUNDEE, SCOTLAND.THE MEETING IN 2009 WAS HOSTED BY THE UNIVERSITY OF UTAH. 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 REGISTERY HAS RECEIVED INSTITUTIONAL REVIEW BOARD APPROVAL THROUGH THE WESTERN INSTIUTIONAL REVIEW BOARD (STUDY NO. 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 1,000 PATIENTS REGISTERED. PC PATIENTS REGISTERED ARE FROM 45 COUNTRIES AND 42 U.S. STATES. 1.170A-9(E)(3)(VII) ADDITIONAL FACTORS PERTINENT TO MEMBERSHIP ORGANIZATIONS. THE TAXPAYER IS NOT A MEMBERSHIP ORGANIZATION.
Return Reference Explanation
PART II, LINE 17A THE FOLLOWING FACTS AND CIRCUMSTANCES ALSO WERE REPORTED TO COME TO A FINAL DETERMINATION THAT THE TAXPAYER 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 TAXPAYER'S PRIMARY GOALS HAVE BEEN (1)TO INTEREST LEADING SCIENTISTS AND PHYSICANS 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 CHARTIEIS ON A CONTINUOUS BASIS. AT NO TIME HAS PC PROJECT CONDUCTED ACTIVITIES WHICH SERVE THE PERSONAL OR PRIVATE INTEREST OF ITS FOUNDERS OR OTHER INSIDERS. THE TAXPAYER MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICIATION OF FUNDS. BROCHURES REQUESTING DONATIONS ARE WIDELY DISTRIBUTED AT SCIENTIFIC, PATIENT SUPPORT, AND PUBLIC EVENTS. THESE BROCHURES WERE ALSO DISTRIBUTED THROUGH DIRECT MAILINGS TO PERSONAL AND PROFESSIONAL CONTACTS. GRANT APPLICATIONS HAVE BEEN MADE TO FOUNDATIONS SUCH AS NFED, NORD, FDA/OOPD, NIH/NIAMS AND OTHERS. 1.170A-9(E)(3)(III) PERCENTAGE OF FINANCIAL SUPPORT. THE TAXPAYER RECEIVED 32.4% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2010 TO 2014. 1.170A-9(E)(3)(IV) SOURCES OF SUPPORT. THE TAXPAYER 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 TAXPAYER IN ITS EXEMPT PURPOSE. 1.170A-9(E)(3)(V) REPRESENTATIVE GOVERNING BODY. THE TAXPAYER 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 FULFILING ITS EXEMPT PURPOSE. 2. THE MEDICAL AND SCIENTIFIC ADVISORY BOARD IS A VOLUNTEER BOARD CONSISTING OF 15 PHYSICIANS AND SCIENTISTS WHO HAVE A SPECIALTY IN DETMATOLOGICAL RESEARCH AND GENETICS, WITH AN EMPHASIS ON KERATIN DISORDERS. SOME MEMBERS OF THIS BOARD ARE IN CONTACT DAILY WITH THE TAXPAYER REGARDING RESEARCH AND PATIENT CARE. MANY ARE IN CONTACT SEVERAL TIMES A MONTH. CONFERENCE CALLS ARE REGULARLY HELD 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 TRHOUGH VARIOUS SOCIAL MEDIA SUCH AS FACEBOOK TO PROVIDE PATIENT OUTREACH AND PATIENT-TO-PATIENT SUPPORT. 1.170A-9(E)(3)(VI) AVILABILITY 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...WILL BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." IN FEBRUARY 2004, THE TAXPAYER ORGANIZED THE FIRST INTERNATIONAL PC CONFERENCE IN WHICH 23 OF THE LEADING KERATIN SPECIALISTS ATTENDED INCLUDING MARIO CAPECCHI (WINNER OF 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 141 EXPERTS WHO ARE ACTIVE MEMBERS OF THE IPCC AND EACH HAS AGREED TO COLLABORATE AND SHARE REAGANTS 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 FOR REVIEW IF NEEDED. BEGINNING WITH THE 2004 SYMPOSIUM, THE TAXPAYER HAS SPONSORED AN ANUAL SCIENTIFIC MEETING EACH YEAR. THE TAXPAYER 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 OFFICALS, PRACTITIONERS IN THE FIELD, AND/OR MEMBERS OF THE GENERAL PUBLIC. IN MANY CASES, MEMBERS OF THE MEDICAL AND SCIENTIFIC ADVISORY BOARD PROVIDED RESPONSES WHEN SPECIFIC SCIENTIFIC OR MEDICAL OPINIONS WERE NEEDED. THE IPCC HAS 3 WORKING TEAMS (1) RESEARCH TEAM CONDUCTING BASIC AND TRANSLATIONAL RESEARCH (2) DIAGNOSTICS AND GENETICS TEAM (3) PHYSICIANS NETWORK. EACH OF THESE TEAMS ARE ACTIVELY PROVIDED 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 2014, THE TAXPAYER'S BOARD MEMBERS AND VOLUNTEERS HAVE CONTRIBUTED TO A NUMBER OF SCHOLARLY STUDIES RELATED TO PC AND PC RESEARCH. PUBLICATIONS CAN BE PROVIDED FOR REVIEW IF NEED AND MANY ARE ON-LINE AND AVAILABLE AT HTTP://WWW.PACHYONYCHIA.ORG/RESEARCH_ARTICLES.PHP . ALSO, IPCC NEWSLETTERS HAVE BEEN PUBLISHED EVERY QUARTER SINCE 2004. THE LATEST EDITION WAS DISTRIBUTED TO OVER 200 VIA E-MAIL AND MAIL.IN ADDITION, NUMEROUS PRESENTATIONS ON PC HAVE BEEN MADE BY BOARD MEMBERS AND VOLUNTEERS IN SCIENTIFIC MEETINGS IN ST LOUIS, MISSOURI; PHILADELPHIA, PENNSYLVANIA; LOS ANGELES, CALIFORNIA; SAN FRANCISCO, CALIFORNIA; WASHINGTON, DC; BUENOS AIRES, ARGENTINA; MAASTRICHT, THE NETHERLANDS;AND VARIOUS OTHER STATES & COUNTRIES. (C) SIMALARLY, 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 OFFICALS, OR CIVIC OR COMMUNITY LEADERS. PLEASE SEE (A) ABOVE FOR A DESCRIPTION OF THE TAXPAYER'S INTERNATIONAL SCIENTIFIC CONFERENCES FOR EXAMPLES OF PARTICIPATION IN, AND SPONSORSHIP OF PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICALS, OR CIVIC OR COMMUNITY LEADERS. IN ADDITION, THE TAXPAYER HAS SEVERAL OTHER ACTIVITIES WHICH DEMONSTRATE THIS BROAD PUBLIC SUPPORT: 1. PATIENT SUPPORT MEETINGS HAVE BEEN HELD IN SALT LAKE CITY, UTAH (2004 AND 2009); KANSAS CITY, MISSOURI (2004); DUNDEE, SCOTLAND (2004 AND 2006); NIAGRA FALLS, ONTARIO (2005); PARK CITY, UTAH (2007); PITLOCHRY, SCOTLAND (2008); EDINBURGH, SCOTLAND(2010, 2012, 2014); PARIS, FRANCE (2010 AND 2012); PHEONIX, AZ, PITTSBURG, PA (2011) AND SANTA CRUZ, CA (2013). MORE THAN A DOZEN PHYSICIANS AND SCIENTISTS VOLUNTEERED THEIR TIME AND PAID THEIR OWN EXPENSES TO ATTEND THE 2007 MEETING AND SIMILAR NUMBERS HAVE ATTENDED EACH MEETING. THERE WERE OVER 50 PC PATIENTS AND MANY OF THEIR FAMILY MEMBERS AT THE 2007 MEETING; AND ATTENDANCE HAS CONTINUED TO INCREASE SINCE. THE 2004 MEETING IN KANSASY CITY WAS HOSTED BY THE FOUNDATION FOR ICHTHYOSIS AND RELATED SKIN TYPES (F.I.R.S.T.). THE MEETING IN 2004, 2006, AND 2008 WERE HOSTED BY THE UNIVERSITY OF DUNDEE, SCOTLAND.THE MEETING IN 2009 WAS HOSTED BY THE UNIVERSITY OF UTAH. 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 REGISTERY HAS RECEIVED INSTITUTIONAL REVIEW BOARD APPROVAL THROUGH THE WESTERN INSTIUTIONAL REVIEW BOARD (STUDY NO. 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 1,000 PATIENTS REGISTERED. PC PATIENTS REGISTERED ARE FROM 45 COUNTRIES AND 42 U.S. STATES. 1.170A-9(E)(3)(VII) ADDITIONAL FACTORS PERTINENT TO MEMBERSHIP ORGANIZATIONS. THE TAXPAYER IS NOT A MEMBERSHIP ORGANIZATION.
PART II, LINE 17B THE FOLLOWING FACTS AND CIRCUMSTANCES ALSO WERE REPORTED TO COME TO A FINAL DETERMINATION THAT THE TAXPAYER 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 TAXPAYER'S PRIMARY GOALS HAVE BEEN (1)TO INTEREST LEADING SCIENTISTS AND PHYSICANS 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 CHARTIEIS ON A CONTINUOUS BASIS. AT NO TIME HAS PC PROJECT CONDUCTED ACTIVITIES WHICH SERVE THE PERSONAL OR PRIVATE INTEREST OF ITS FOUNDERS OR OTHER INSIDERS. THE TAXPAYER MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICIATION OF FUNDS. BROCHURES REQUESTING DONATIONS ARE WIDELY DISTRIBUTED AT SCIENTIFIC, PATIENT SUPPORT, AND PUBLIC EVENTS. THESE BROCHURES WERE ALSO DISTRIBUTED THROUGH DIRECT MAILINGS TO PERSONAL AND PROFESSIONAL CONTACTS. GRANT APPLICATIONS HAVE BEEN MADE TO FOUNDATIONS SUCH AS NFED, NORD, FDA/OOPD, NIH/NIAMS AND OTHERS. 1.170A-9(E)(3)(III) PERCENTAGE OF FINANCIAL SUPPORT. THE TAXPAYER RECEIVED 30.82% OF ITS SUPPORT FROM PUBLIC SOURCES FROM 2009 TO 2013. 1.170A-9(E)(3)(IV) SOURCES OF SUPPORT. THE TAXPAYER 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 TAXPAYER IN ITS EXEMPT PURPOSE. 1.170A-9(E)(3)(V) REPRESENTATIVE GOVERNING BODY. THE TAXPAYER 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 FULFILING ITS EXEMPT PURPOSE. 2. THE MEDICAL AND SCIENTIFIC ADVISORY BOARD IS A VOLUNTEER BOARD CONSISTING OF 15 PHYSICIANS AND SCIENTISTS WHO HAVE A SPECIALTY IN DETMATOLOGICAL RESEARCH AND GENETICS, WITH AN EMPHASIS ON KERATIN DISORDERS. SOME MEMBERS OF THIS BOARD ARE IN CONTACT DAILY WITH THE TAXPAYER REGARDING RESEARCH AND PATIENT CARE. MANY ARE IN CONTACT SEVERAL TIMES A MONTH. CONFERENCE CALLS ARE REGULARLY HELD 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 TRHOUGH VARIOUS SOCIAL MEDIA SUCH AS FACEBOOK TO PROVIDE PATIENT OUTREACH AND PATIENT-TO-PATIENT SUPPORT. 1.170A-9(E)(3)(VI) AVILABILITY 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...WILL BE CONSIDERED EVIDENCE THAT SUCH ORGANIZATION IS "PUBLICLY SUPPORTED." IN FEBRUARY 2004, THE TAXPAYER ORGANIZED THE FIRST INTERNATIONAL PC CONFERENCE IN WHICH 23 OF THE LEADING KERATIN SPECIALISTS ATTENDED INCLUDING MARIO CAPECCHI (WINNER OF 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 141 EXPERTS WHO ARE ACTIVE MEMBERS OF THE IPCC AND EACH HAS AGREED TO COLLABORATE AND SHARE REAGANTS 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 FOR REVIEW IF NEEDED. BEGINNING WITH THE 2004 SYMPOSIUM, THE TAXPAYER HAS SPONSORED AN ANUAL SCIENTIFIC MEETING EACH YEAR. THE TAXPAYER 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 OFFICALS, PRACTITIONERS IN THE FIELD, AND/OR MEMBERS OF THE GENERAL PUBLIC. IN MANY CASES, MEMBERS OF THE MEDICAL AND SCIENTIFIC ADVISORY BOARD PROVIDED RESPONSES WHEN SPECIFIC SCIENTIFIC OR MEDICAL OPINIONS WERE NEEDED. THE IPCC HAS 3 WORKING TEAMS (1) RESEARCH TEAM CONDUCTING BASIC AND TRANSLATIONAL RESEARCH (2) DIAGNOSTICS AND GENETICS TEAM (3) PHYSICIANS NETWORK. EACH OF THESE TEAMS ARE ACTIVELY PROVIDED 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 2013, THE TAXPAYER'S BOARD MEMBERS AND VOLUNTEERS HAVE CONTRIBUTED TO A NUMBER OF SCHOLARLY STUDIES RELATED TO PC AND PC RESEARCH. PUBLICATIONS CAN BE PROVIDED FOR REVIEW IF NEED AND MANY ARE ON-LINE AND AVAILABLE AT HTTP://WWW.PACHYONYCHIA.ORG/RESEARCH_ARTICLES.PHP . ALSO, IPCC NEWSLETTERS HAVE BEEN PUBLISHED EVERY QUARTER SINCE 2004. THE LATEST EDITION WAS DISTRIBUTED TO OVER 200 VIA E-MAIL AND MAIL.IN ADDITION, NUMEROUS PRESENTATIONS ON PC HAVE BEEN MADE BY BOARD MEMBERS AND VOLUNTEERS IN SCIENTIFIC MEETINGS IN ST LOUIS, MISSOURI; PHILADELPHIA, PENNSYLVANIA; LOS ANGELES, CALIFORNIA; SAN FRANCISCO, CALIFORNIA; WASHINGTON, DC; BUENOS AIRES, ARGENTINA; MAASTRICHT, THE NETHERLANDS;AND VARIOUS OTHER STATES & COUNTRIES. (C) SIMALARLY, 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 OFFICALS, OR CIVIC OR COMMUNITY LEADERS. PLEASE SEE (A) ABOVE FOR A DESCRIPTION OF THE TAXPAYER'S INTERNATIONAL SCIENTIFIC CONFERENCES FOR EXAMPLES OF PARTICIPATION IN, AND SPONSORSHIP OF PROGRAMS OF THE ORGANIZATION BY MEMBERS OF THE PUBLIC HAVING SPECIAL KNOWLEDGE OR EXPERTISE, PUBLIC OFFICALS, OR CIVIC OR COMMUNITY LEADERS. IN ADDITION, THE TAXPAYER HAS SEVERAL OTHER ACTIVITIES WHICH DEMONSTRATE THIS BROAD PUBLIC SUPPORT: 1. PATIENT SUPPORT MEETINGS HAVE BEEN HELD IN SALT LAKE CITY, UTAH (2004 AND 2009); KANSAS CITY, MISSOURI (2004); DUNDEE, SCOTLAND (2004 AND 2006); NIAGRA FALLS, ONTARIO (2005); PARK CITY, UTAH (2007); PITLOCHRY, SCOTLAND (2008); EDINBURGH, SCOTLAND AND PARIS, FRANCE (2010 AND 2012); PHEONIX, AZ, PITTSBURG, PA (2011) AND SANTA CRUZ, CA (2013). MORE THAN A DOZEN PHYSICIANS AND SCIENTISTS VOLUNTEERED THEIR TIME AND PAID THEIR OWN EXPENSES TO ATTEND THE 2007 MEETING AND SIMILAR NUMBERS HAVE ATTENDED EACH MEETING. THERE WERE OVER 50 PC PATIENTS AND MANY OF THEIR FAMILY MEMBERS AT THE 2007 MEETING; AND ATTENDANCE HAS CONTINUED TO INCREASE SINCE. THE 2004 MEETING IN KANSASY CITY WAS HOSTED BY THE FOUNDATION FOR ICHTHYOSIS AND RELATED SKIN TYPES (F.I.R.S.T.). THE MEETING IN 2004, 2006, AND 2008 WERE HOSTED BY THE UNIVERSITY OF DUNDEE, SCOTLAND.THE MEETING IN 2009 WAS HOSTED BY THE UNIVERSITY OF UTAH. 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 REGISTERY HAS RECEIVED INSTITUTIONAL REVIEW BOARD APPROVAL THROUGH THE WESTERN INSTIUTIONAL REVIEW BOARD (STUDY NO. 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 1,000 PATIENTS REGISTERED. PC PATIENTS REGISTERED ARE FROM 45 COUNTRIES AND 42 U.S. STATES. 1.170A-9(E)(3)(VII) ADDITIONAL FACTORS PERTINENT TO MEMBERSHIP ORGANIZATIONS. THE TAXPAYER IS NOT A MEMBERSHIP ORGANIZATION.
Schedule A (Form 990 or 990-EZ) 2014


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