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.
Attach to Form 990 or Form 990-EZ. See separate instructions.
OMB No. 1545-0047
2011
Open to Public Inspection
Name of the organization
BASAL CELL CARCINOMA NEVUS SYNDROME LIFE SUPPORT NETWORK
Employer identification number
34-1915691
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
section 170(b)(1)(A)(iv). (Complete Part II.)
6
7
8
9
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.)
10
11
e
By checking this box, I certify that the organization is not controlled directly or indirectly by one or more disqualified persons other than foundation managers and other than one or more publicly supported organizations described in section 509(a)(1) or section 509(a)(2).
f
If the organization received a written determination from the IRS that it is a Type I, Type II or Type III supporting organization, check this box
..................................................
g
Since August 17, 2006, has the organization accepted any gift or contribution from any of the following persons?
(i) a person who directly or indirectly controls, either alone or together with persons described in (ii)
Yes
No
and (iii) below, the governing body of the the supported organization?
................
11g(i)
(ii)
a family member of a person described in (i) above?
......................
11g(ii)
(iii)
a 35% controlled entity of a person described in (i) or (ii) above?
................
11g(iii)
h
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 in col. (i) listed in your governing document?
(v) Did you notify the organization in col. (i) of your support?
(vi) Is the organization in col. (i) organized in the U.S.?
(vii) Amount of support?
Yes
No
Yes
No
Yes
No
Total
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 2
Part II
Support Schedule for Organizations Described in IRC 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)
(a) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
1
Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") ....
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..
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)..
6
Public Support. Subtract line 5 from line 4.
Section B. Total Support
Calendar year(or fiscal year beginning in)
(a) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
7
Amounts from line 4..
8
Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..
9
Net income from unrelated business activities, whether or not the business is regularly carried on..
10
Other income. (Explain in Part IV.) Do not include gain or loss from the sale of capital assets..
11
Total support (Add lines 7 through 10).
12
Gross receipts from related activities, etc. (See instructions.)
..................
12
13
First Five Years
If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a 501(c)(3) organization,
check this box and stop here..........................................
Section C. Computation of Public Support Percentage
14
Public Support Percentage for 2010 (line 6 column (f) divided by line 11 column (f))
.........
14
15
Public Support Percentage for 2009 Schedule A, Part II, line 14
...............
15
16a
33 1/3% support test—2011.
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
......................
b
33 1/3% support test—2010.
If the organization did not check the 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
.....................
17a
10%-facts-and-circumstances test—2011.
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 IV how the organization meets the "facts and circumstances" test. The organization qualifies as a publicly supported
organization
..................................................
b
10%-facts-and-circumstances test—2010.
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 IV how the organization meets the "facts and circumstances" test. The organization qualifies as a publicly supported organization
..............................................
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
...................................................
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 3
Part III
Support Schedule for Organizations Described in IRC 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)
(a) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
1
Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .
95,886
106,556
155,994
194,431
199,232
752,099
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......
14,193
699
3,433
22,184
36,300
76,809
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.
110,079
107,255
159,427
216,615
235,532
828,908
7a
Amounts included on lines 1, 2, and 3 received from disqualified persons...
75,000
99,000
98,500
149,000
102,000
523,500
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..
75,000
99,000
98,500
149,000
102,000
523,500
8
Public Support (Subtract line 7c from line 6.)
305,408
Section B. Total Support
Calendar year (or fiscal year beginning in)
(a) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
9
Amounts from line 6...
110,079
107,255
159,427
216,615
235,532
828,908
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 IV.)
13
Total support (Add lines 9, 10c, 11 and 12.).
110,079
107,255
159,427
216,615
235,532
828,908
14
First Five Years
If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a 501(c)(3) organization,
check this box and stop here.............................................
Section C. Computation of Public Support Percentage
15
Public Support Percentage for 2011 (line 8 column (f) divided by line 13 column (f))
.........
15
36.840 %
16
Public support percentage from 2010 Schedule A, Part III, line 15
...............
16
30.470 %
Section D. Computation of Investment Income Percentage
17
Investment income percentage for 2011 (line 10c column (f) divided by line 13 column (f))
......
17
0 %
18
Investment income percentage from 2010 Schedule A, Part III, line 17
.............
18
19a
33 1/3% support tests—2011.
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
..........
b
33 1/3% support tests—2010.
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
....
20
Private Foundation
If the organization did not check a box on line 14, 19a or 19b, check this box and see instructions
.....
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 4
Part IV
Supplemental Information.
Supplemental Information. Complete this part to provide the explanation required by Part II, line 10; Part II, line 17a or 17b; or Part III, line 12. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
Explanation
Schedule A (Form 990 or 990-EZ) 2011
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 to provide any additional information.
Attach to Form 990 or 990-EZ.
OMB No. 1545-0047
2011
Open to Public Inspection
Name of the organization
BASAL CELL CARCINOMA NEVUS SYNDROME LIFE SUPPORT NETWORK
Employer identification number
34-1915691
Identifier
Return Reference
Explanation
ORGANIZATION'S MISSION
FORM 990 - ORGANIZATION'S MISSION
THE MISSION OF THE BCCNS LIFE SUPPORT NETWORK IS TO: FOCUS ON THE EARLY DIAGNOSIS AND TREATMENT OF CHILDREN EVIDENCING AN INITIAL ONSET OF BCCNS; DEVELOP INFORMATION ABOUT THE MEDICAL CONDITIONS AND DISORDERS EXPERIENCED BY THOSE LIVING WITH BCCNS; SHARE THIS INFORMATION WITH CLINICS AND HEALTHCARE PROVIDERS TREATING BCCNS PATIENTS, AND OTHER SIMILARLY AFFECTED POPULATIONS; ENGAGE AFFECTED INDIVIDUALS AND THEIR FAMILIES, CAREGIVERS, COLLEAGUES, AND SCHOOLS IN CREATIVE LEARNING OPPORTUNITIES TO EFFECT AN OPTIMUM QUALITY OF LIFE AND ATTAIN MAXIMUM PERSONAL POTENTIALS THROUGH INFORMED COMMUNICATION; STRENGTHEN THE CAPACITY OF PATIENTS AND THEIR FAMILIES TO MANAGE THEIR DISEASE; AND ESTABLISH AND FOSTER A NETWORK OF MEDICAL PROFESSIONALS ACTIVELY ENGAGED IN ADVANCING THE WELFARE OF THE BCCNS PATIENT COMMUNITY.
FIRST ACCOMPLISHMENT DESCRIPTION
FORM 990, PAGE 2, PART III, LINE 4A
THE NETWORK WAS INVITED TO PARTICIPATE IN ONE VOICE AGAINST CANCER (OVAC) AS A REPRESENTATIVE OF THE AMERICAN ACADEMY OF DERMATOLOGY IN WASHINGTON, D.C. WE CREATED, HOSTED, AUTHORED AND SCRIPTED A SYMPOSIUM ON GORLIN SYNDROME IN ORDER TO EDUCATION DERMATOLOGIC RESEARCHERS ABOUT THE MANY MANIFESTATIONS OF THE CONDITION AND THE PROMISE OF HOPE IN THE ARENAS OF GENETIC MODIFIERS, TARGETED AT THE GENE MUTATIONS WHICH CAUSE THE CONDITION. DONATIONS WERE ALSO RECEIVED TO BEGIN TO CREATE AND ESTABLISH A FUND FOR PROGRAMMING RELATED TO MUSIC, ART, HORTICULTURE, THERAPEUTIC ACTIVITIES AND SPIRITUAL AND EMOTIONAL WELL BEING, CONDUCTED IN CONJUNCTION WITH NATIONAL AND REGIONAL MEETINGS. THE EXECUTIVE DIRECTOR WAS APPOINTED TO SERVE AS AN AMBASSADOR FOR THE SKIN CANCER INSTITUTE OF CASE WESTERN RESERVE UNIVERSITY AS A PUBLIC MEMBER, INCREASING OUR OUTREACH AND AWARENESS. STAFF PARTICIPATED IN SEVERAL INTERNATIONAL MEDICAL EDUCATIONAL CONFERENCES TO TEACH, INFORM AND LEARN ABOUT THE COMPLEXITIES OF THE CONDITION, AND PROVIDED NETWORKING OPPORTUNITIES WHICH ULTIMATELY LED TO THE DEVELOP OF GORLIN SYNDROME SPECIFIC CLINICAL TRIALS INVOLVING HEDGEHOG INHIBITORS AND OTHER THERAPEUTIC AGENTS, SUCH AS GDC-0449, VISMODEGIB; LDE-225 (CHEMO THERAPEUTICS) AND INITIAL TOPICAL APPLICATIONS AS WELL. THE EXECUTIVE DIRECTOR WAS APPOINTED TO SERVE ON THE COMMISSION ON DENTAL ACCREDITATION OF THE AMERICAN DENTISTRY ASSOCIATION, AS A RESULT OF HER WORK WITH THE UNDERSERVED POPULATION. TOTAL PROGRAMMING ACTIVITIES INCLUDED ATTENDEES THAT ENCOMPASSED DOCTORS, NURSES, CAREGIVERS, AFFECTED INDIVIDUALS, EXTENDED FAMILIES, REACHING NEARLY 6,700 UNIQUE PERSONS, THROUGHOUT THE UNITED STATES AND ABROAD TO 20 COUNTRIES AND 5 CONTINENTS.
ADDITIONAL INFORMATION
FORM 990, PART V
AN UNRELATED ENTITY EMPLOYS THE INDIVIDUALS WHO DIRECT THE ACTIVITIES OF THE ORGANIZATION AND THEREFORE THERE ARE NO W-2'S ISSUED. COMPENSATION PAID BY THE UNRELATED ENTITY IS REIMBURSED BY THE ORGANIZATION ON A REGULAR BASIS. PAYROLL TAXES ON THIS COMPENSATION ARE REMITTED TO THE TAX AUTHORITIES BY THE UNRELATED ENTITY. REMIBURSEMENTS FOR COMPENSATION IS CLASSIFIED WIHTIN THE "CONTRACTED SERVICES" LINE ON 24A, PAGE 10 OF THE FORM 990. TOTAL 2011 COMPENSATION PAID TO THE EXECUTIVE DIRECTOR WAS 48,000. THERE WAS NO HOSPITALIZATION OR OTHER NONTAXABLE FRINGE BENEFITS PROVIDED.
RELATED PARTY INFORMATION AMONG OFFICERS
FORM 990, PAGE 6, PART VI, LINE 2
ALAN ROTH KATHLYN ROTH TRUSTEE TRUSTEE SPOUSE
ORGANIZATION'S PROCESS USED TO REVIEW FORM 990
FORM 990, PAGE 6, PART VI, LINE 11B
PRIOR TO FILING, THE FORM 990 WAS PRESENTED TO THE EXECUTIVE DIRECTOR FOR REVIEW. AFTER MODIFICATIONS WERE MADE TO THE RETURN POST-REVIEW, THE FULL FORM 990 WAS ELECTRONICALLY FORWARDED TO THE BOARD. THE BOARD WAS PROVIDED A PERIOD OF TIME TO REVIEWTHE RETURN PRIOR TO FINAL FILING OF THE FORM 990. A BOARD OFFICER SIGNS THE 990.
ENFORCEMENT OF CONFLICTS POLICY
FORM 990, PAGE 6, PART VI, LINE 12C
EACH YEAR, THE BOARD MEMBERS ARE INTERVIEWED BY THE EXECUTIVE DIRECTOR WITH REGARD TO POTENTIAL CONFLICTS OF INTEREST AS DEFINED IN THE ORGANIZATION'S CONFLICT OF INTEREST POLICY. AMONG OTHER THINGS, THE POLICY MAKES CLEAR THAT ALL DECISIONS OF THE BOARD, OFFICERS, AND EMPLOYEES OF THE ORGANIZATION ARE MADE SOLELY ON THE BASIS OF A DESIRE TO PROMOTE THE BEST INTEREST OF THE ORGANIZATION AND THE PUBLIC GOOD. THE CONFLICT OF INTEREST INTERVIEW REQUEIRES BOARD MEMBERS TO IDENTIFY TO THE BEST OF THEIR KNOWLEDGE AFFILIATIONS WITH ORGANIZATIONS THAT MAY BE POTENTIALLY RELATED TO THE FINANCIALS OR OTHER SUBSTANTIVE OPERATIONS OF THE ORGANIZATION. THEY ARE ALSO ASKED TO IDENTIFY CIRCUMSTANCES INVOLVING EITHER THEMSELVES, OR A MEMBER OF THEIR EXTENDED FAMILY, THAT MAY BE CONSTRUED AS A CONFLICT OF INTEREST. AT THE STAFF LEVEL, THE ORGANIZATION'S PERSONNEL ALSO ENSURE THAT THERE ARE NO CONFLICTS OF INTEREST WHEN CONSIDERING THE ENGAGEMENT OF A NEW VENDOR. IF A POTENTIAL CONFLICT IS IDENTIFIED, APPROPRIATE STEPS ARE TAKEN TO BOTH ASSESS THE NATURE OF THE POTENTIAL CONFLICT AND, SUBSEQUENTLY, TO ENSURE THAT THE POSSIBILITY OF AN ACTUAL CONFLICT IS MITIGATED. SUCH MITIGATION IS MANAGED AND THE LETTER AND SPIRIT OF THE CONFLICTS POLICY ARE UPHELD.
COMPENSATION PROCESS FOR TOP OFFICIAL
FORM 990, PAGE 6, PART VI, LINE 15A
THE MEDICAL ADVISORY BOARD (NONVOTING) CHAIR QUARTERLY AND ANNUALLY EVALUATES THE PERFORMANCE OF THE EXECUTIVE DIRECTOR. COMPENSATION IS BASED ON PERFORMANCE AND COMPARED TO OTHER AREA MISSION-COMPARABLE ORGANIZATIONS OF SIMILAR SIZE. COMPENSATION FOR STAFF WITHIN THE ORGANIZATION IS DETERMINED BY THE EXECUTIVE DIRECTOR. THE LEVEL OF COMPENSATION IS SET BASED ON PERFORMANCE AND IN RELATION TO OTHER AREA MISSION-COMPARABLE ORGANIZATIONS OF SIMILAR SIZE. THIS COMPENSATION IS A COMPONENT OF THE BUDGET, WHICH IS REVIEWED AND APPROVED BY THE FINANCE COMMITTEE AND ALSO BY THE BOARD AS A WHOLE.
GOVERNING DOCUMENTS DISCLOSURE EXPLANATION
FORM 990, PAGE 6, PART VI, LINE 19
THE ORGANIZATION'S GOVERNING DOCUMENTS, FORM 1023 AND FORM 990 ARE MADE AVAILABLE TO THE PUBLIC UPON REQUEST. THE FORM 990 CAN ALSO BE FOUND ON SEVERAL PUBLICLY-ACCESSIBLE WEBSITES.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.