Form990-EZ
Click to see attachment
Department of the Treasury
Internal Revenue Service
Short Form
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code
(except black lung benefit trust or private foundation)
bullet Sponsoring organizations of donor advised funds, organizations that operate one or more hospital facilities, and certain controlling organizations as defined in section 512(b)(13) must file Form 990 (see instructions).
All other organizations with gross receipts less than $200,000 and total assets less than $500,000 at the end of the year may use this form.
bulletThe organization may have to use a copy of this return to satisfy state reporting requirements.
OMB No. 1545-1150
2012
Open to Public
Inspection
A
For the 2012 calendar year, or tax year beginning 01-01-2012, and ending 12-31-2012
B
Check if applicable:
C Name of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK
Number and street (or P. O. box, if mail is not delivered to street address)P O BOX 321
  Room/suite
City or town, state or country, and ZIP + 4 BURTON, OH44021
D Employer identification number

34-1915691
E Telephone number

(440) 834-0011
F Group Exemption
Number. . bullet  
G Accounting Method: Other (specify) bullet   H Check bulletI Website:bulletWWW.BCCNS.ORGJ Tax-exempt status(check only one)—Click to see attachment(   ) bullet(insert no.) or
K Check bullet A Form 990-EZ or Form 990 return is not required though Form 990-N (e-postcard) may be required (see instructions). But if the organization chooses to file a return, be sure to file a complete return.
L Add lines 5b, 6c, and 7b, to line 9 to determine gross receipts. If gross receipts are $200,000 or more, or if total assets (Part II, line 25, column (B) below) are $500,000 or more, file Form 990 instead of Form 990-EZ . . . . . . . bullet $ 184,296
Part I
Revenue, Expenses, and Changes in Net Assets or Fund Balances (see the instructions for Part I)Check if the organization used Schedule O to respond to any question in this Part I...................
VerticalRevenue 1 Contributions, gifts, grants, and similar amounts received............... 1 155,272
2 Program service revenue including government fees and contracts ............ 2 15,736
3 Membership dues and assessments...................... 3  
4 Investment income........................... 4 125
5a Gross amount from sale of assets other than inventory........ 5a  
b Less: cost or other basis and sales expenses........... 5b  
c Gain or (loss) from sale of assets other than inventory (Subtract line 5b from line 5a) ...... 5c  
6 Gaming and fundraising events
a Gross income from gaming (attach Schedule G if greater than $15,000) . 6a  
b Gross income from fundraising events (not including $ 15,371 of contributions
from fundraising events reported on line 1) (attach Schedule G if the Click to see attachment
sum of such gross income and contributions exceeds $15,000) 6b 13,163
c Less: direct expenses from gaming and fundraising events....... 6c 13,366
d Net income or (loss) from gaming and fundraising events (add lines 6a and 6b and subtract line 6c) 6d -203
7a Gross sales of inventory, less returns and allowances........ 7a  
b Less: cost of goods sold................. 7b  
c Gross profit or (loss) from sales of inventory (Subtract line 7b from line 7a) ......... 7c  
8 Other revenue (describe in Schedule O) ..................... 8  
9 Total revenue. Add lines 1, 2, 3, 4, 5c, 6d, 7c, and 8.............. Bullet 9 170,930
VerticalExpenses 10 Grants and similar amounts paid (list in Schedule O) ................. 10  
11 Benefits paid to or for members........................ 11  
12 Salaries, other compensation, and employee benefits................ 12  
13 Professional fees and other payments to independent contractors............ 13 6,444
14 Occupancy, rent, utilities, and maintenance................... 14 10,796
15 Printing, publications, postage, and shipping................... 15 16,676
16 Other expenses (describe in Schedule O) .................... 16 231,494
17 Total expenses. Add lines 10 through 16 ................. Bullet 17 265,410
VerticalNetAssets 18 Excess or (deficit) for the year (Subtract line 17 from line 9)............ 18 -94,480
19 Net assets or fund balances at beginning of year (from line 27, column (A)) (must agree with
end-of-year figure reported on prior year’s return)................ 19 84,491
20 Other changes in net assets or fund balances (explain in Schedule O) .......... 20  
21 Net assets or fund balances at end of year. Combine lines 18 through 20.........Bullet 21 -9,989
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 10642I Form 990-EZ (2012)
Form 990-EZ (2012)
Page 2
Part IIBalance Sheets (see the instructions for Part II)Check if the organization used Schedule O to respond to any question in this Part II.................

(A) Beginning of year(B) End of year
22Cash, savings, and investments................
52,836
22
10,218
23Land and buildings....................
 
23
 
24Other assets (describe in Schedule O) ..........
70,416
24
31,557
25Total assets......................
123,252
25
41,775
26
Total liabilities (describe in Schedule O) .............
38,761
26
51,764
27Net assets or fund balances (line 27 of column (B) must agree with line 21)..
84,491
27
-9,989
Part IIIStatement of Program Service Accomplishments (see the instructions for Part III) Check if the organization used Schedule O to respond to any question in this Part III . Expenses
(Required for section 501(c)(3) and 501(c)(4) organizations and section 4947(a)(1) trusts; optional for others.)
What is the organization's primary exempt purpose? 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.
Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. In a clear and concise manner, describe the services provided, the number of persons benefited, and other relevant information for each program title.
28 THE NETWORK ATTENDED THE FOLLOWING MEDICAL PROFESSIONAL MEETINGS IN 2012 TO EDUCATE MORE HEALTHCARE PROVIDERS ABOUT THE TOOLS FOR DIAGNOSIS, EARLY INTERVENTION AND TREATMENT /MANAGEMENT PROTOCOLS: "AMERICAN ACADEMY OF DERMATOLOGY; ADVOCACY BOOTH; PANEL SPEAKER "AMERICAN SOCIETY OF CLINICAL ONCOLOGY; ADVOCACY BOOTH "SOCIETY FOR INVESTIGATIVE DERMATOLOGY; NETWORK HOSTED "HEDGEHOG: HEAD TO TOE", MEDICAL SYMPOSIUM "INTL. SYMPOSIUM ON PED. NEURO-ONCOLOGY; ADVOCACY BOOTH & COMMENTATOR "AAD RESEARCH AGENDA CONSENSUS CONFERENCE ""ONE VOICE AGAINST CANCER" LOBBY DAY IN CONJUNCTION WITH: AMERICAN ACADEMY OF DERMATOLOGY; AMERICAN CANCER SOCIETY; LANCE ARMSTRONG FOUNDATION AND OVER 30 OTHER ORGANIZATIONS, HELD IN WASHINGTON, DC. BCCNS NETWORK WAS ABLE TO HOST THREE REGIONAL MEETINGS (RALEIGH, NC; BOIS BLANC ISLAND, MI; BURTON, OH) THIS YEAR WITH THE GRANT SUPPORT FROM NOVARTIS. WE ALSO CONDUCTED A MEDICAL SYMPOSIUM, "HEDGEHOG: HEAD TO TOE", AT THE SOCIETY FOR INVESTIGATIVE DERMATOLOGY ANNUAL MEETING. THE "YOU ARE NOT ALONE" OUTREACH PROGRAM ENCOMPASSED PEOPLE NATIONWIDE AND GLOBALLY, ESPECIALLY TARGETING UNDER-SERVED POPULATIONS AND AT-RISK COMMUNITIES - THOSE WHO WOULD OTHERWISE LACK ACCESS TO RELIABLE INFORMATION CONCERNING THIS COMPLEX ORPHAN CONDITION. THROUGH ATTENDANCE AT THE ABOVE MENTIONED REGIONAL MEMBER/PROFESSIONAL MEETINGS AND SYMPOSIUM, WE HAD DIRECT CONTACT WITH OVER 675 DISTINCT INDIVIDUALS. THE EDUCATIONAL PROGRAMMING REACHES 1,000'S MORE THROUGH DISTRIBUTION OF DISEASE SPECIFIC MATERIALS, CLINICAL TRIAL PARTICIPATION, MEDICAL PROFESSIONAL CONFERENCES, ONLINE SOCIAL MEDIA AVENUES AND DIRECT CONTACT VIA TELEPHONE, E-MAIL, WEBSITE AND IN-PERSON INTERACTION. WE IDENTIFIED AND INVOLVED 2 NEW MEDICAL ADVISORY BOARD MEMBERS. 2012 ALSO MARKED A MILESTONE AFTER ENROLLING 42 MEMBERS WHO PRESENTED OVER 2,000 BCCS FOR A SUCCESSFUL CLINICAL TRIAL, THE FDA APPROVED A NEW DRUG, VISMODEGIB, (TRADE NAME ERIVEDGE BY GENENTECH, A ROCHE GROUP) AS THE FIRST IN CLASS FOR SYSTEMIC GENETIC HEDGEHOG INHIBITOR TREATMENT FOR ADULTS WITH INVASIVE BCC. HUNDREDS OF PERSONS WITH ADVANCED AND METASTATIC BCCS, ARE NOW BENEFITTING FROM THIS CHEMO THERAPEUTIC. POST CONFERENCE AND REGIONAL MEETING EVALUATIONS WERE COMPLETED BY 82% OF ATTENDEES AND OFFERED INSIGHT FOR FUTURE PROGRAMMING AND NEEDS ASSESSMENT. SATISFACTION WAS 90 PLUS IN 92 PERCENTILE OF ATTENDEES FOR ALL VENUES. COLLATERAL MATERIALS, NEWSLETTERS, EDUCATIONAL ARTICLES, INFORMATION ON CLINICAL TRIALS, ONLINE FORUM AND SOCIAL MEDIA AVENUES ARE AVAILABLE THROUGH THE NETWORK'S ORGANIZATIONAL WEBSITE WHICH RECEIVES 6,212 UNIQUE VISITORS AND 10,029 VISITS ANNUALLY WITH 29,605 PAGE VIEWS. OUR EXECUTIVE DIRECTOR, KRISTI SCHMITT BURR, SERVES AS A MEMBER OF: FOOD AND DRUG ADMINISTRATION (FDA) PATIENT REPRESENTATIVE; COMMISSION ON DENTAL ACCREDITATION (CODA) PUBLIC MEMBER; THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM FOR THE DEPT. DEFENSE. THE SUPPORT NETWORK IS A MEMBER IN GOOD STANDING OF: DERMATOLOGY NURSES ASSOCIATION; NATIONAL ORGANIZATION FOR RARE DISORDERS; COALITION OF SKIN DISEASES; AND GENETIC ALLIANCE. OUR PROGRAM DIRECTORS AND STAFF HAVE BEEN ABLE TO EXPAND INTERACTIVE PROGRAMMING AND SERVICES BY CONNECTING AFFECTED INDIVIDUALS, THEIR FAMILIES, CAREGIVERS, AND THE PROFESSIONALS WHO CARE FOR THEM THROUGH THE CREATION OF DIDACTIC LEARNING SESSIONS. SUCCESSFUL COLLABORATION HAS ALLOWED US THE OPPORTUNITY TO: 1.FOCUS ON THE EARLY DIAGNOSIS AND TREATMENT OF CHILDREN; 2.AUTHOR & PUBLISH DIAGNOSIS AND TREATMENT PROTOCOLS IN THE AMERICAN JOURNAL OF MEDICAL GENETICS AND GENETICS IN MEDICINE THROUGH COLLABORATION EFFORTS WITH: DR. VIRGINIA KIMONIS, UNIV. OF CA, IRVINE; DR. ALANNA BREE, TX;& DR. MAULIK SHAH, FL; 3.AUGMENT DIRECT COMMUNICATION AND MEMBER OUTREACH INCREASING OUR FAMILY MEMBERSHIP BY 62 NEW FAMILIES THIS YEAR (EACH WITH MULTIPLE AFFECTED FAMILY MEMBERS); 4.FOSTER RESPONSIBILITY THROUGH UNDERSTANDING OF TREATMENT OPTIONS; 5.HOST THREE EDUCATIONAL RETREATS AND MEMBER MEETINGS IN 2012, REACHING MANY, WHO IN THE PAST HAVE NOT BEEN ABLE TO ATTEND DUE TO FINANCIAL CONSTRAINTS; 6.ATTEND PROFESSIONAL MEETINGS TO EDUCATE CLINICIANS, RESEARCHERS, PROFESSORS AND DEPARTMENT CHAIRS AND SUPPLEMENT THEIR AWARENESS OF THIS CONDITION, MANIFESTATIONS, TREATMENT OPTIONS AND CLINICAL TRIAL OPPORTUNITIES. THESE EXPERIENCES HAVE PROVIDED US WITH INVALUABLE CONTACTS AND RESOURCES.
(Grants $   ) If this amount includes foreign grants, check here ...MediumBullet		 28a 221,026
29
(Grants $   ) If this amount includes foreign grants, check here ...MediumBullet 		29a
30
(Grants $   ) If this amount includes foreign grants, check here ...MediumBullet 		30a
31 Other program services (describe in Schedule O)
(Grants $   ) If this amount includes foreign grants, check here...MediumBullet		 31a
32 Total program service expenses (add lines 28a through 31a).......... bullet 32 221,026
Part IV
List of Officers, Directors, Trustees, and Key Employees List each one even if not compensated (see the instructions for Part IV)Check if the organization used Schedule O to respond to any question in this Part IV............
(a) Name and title (b) Average
hours per week
devoted to position		 (c)Reportable compensation
(Forms W-2/1099-MISC) (if not paid, enter -0-) 		(d) Health benefits, contributions to employee benefit plans,
and deferred compensation		 (e) Estimated amount
of other compensation
MICHAEL RAINENClick to see attachmentTRUSTEE 2.00 0    
WILLIAM GINNClick to see attachmentPRESIDENT 10.00 0    
BRYANT BRADLEYClick to see attachmentTRUSTEE 2.00 0    
JULIE BRENEISERClick to see attachmentTRUSTEE 2.00 0    
KRISTI SCHMITT BURRClick to see attachmentEXECUTIVE DI 40.00 0    
CINDY SHELLEYClick to see attachmentTRUSTEE 2.00 0    
ALAN ROTHClick to see attachmentTRUSTEE 2.00 0    
ELLEN MCCABEClick to see attachmentTREASURER 2.00 0    
KATHLYN ROTHClick to see attachmentSECRETARY 2.00 0    
RIC JONESClick to see attachmentTRUSTEE 2.00 0    
Form 990-EZ (2012)
Form 990-EZ (2012)
Page 3
Part V
Other Information
(Note the Schedule A and personal benefit contract statement requirements in the
instructions for Part V.) Check if the organization used Schedule O to respond to any question in this Part V.......
Yes
No
33
Did the organization engage in any significant activity not previously reported to the IRS? If "Yes," provide a detailed description of each activity in Schedule O ...................
33
 
No
34
Were any significant changes made to the organizing or governing documents? If "Yes," attach a conformed copy of the amended documents if they reflect a change to the organization’s name. Otherwise, explain the changeon Schedule O (see instructions) ..........................
34
 
No
35a
Did the organization have unrelated business gross income of $1,000 or more during the year from business activities (such as those reported on lines 2, 6a, and 7a, among others)? ............
35a
 
No
b
If "Yes," to line 35a, has the organization filed a Form 990-T for the year? If "No," provide an explanation in Schedule O
35b
 
 
c
Was the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization subject to section 6033(e) notice, reporting, and proxy tax requirements during the year? If "Yes," complete Schedule C, Part III
35c
 
No
36
Did the organization undergo a liquidation, dissolution, termination, or significant disposition of net assets during the year? If “Yes,” complete applicable parts of Schedule N ................
36
 
No
37a
Enter amount of political expenditures, direct or indirect, as described in the instructions. bullet
37a
 
b
Did the organization file Form 1120-POL for this year?...................
37b
 
No
38a
Did the organization borrow from, or make any loans to, any officer, director, trustee, or key employee or were
any such loans made in a prior year and still outstanding at the end of the tax year covered by this return?..
38a
 
No
b
If “Yes,” complete Schedule L, Part II and enter the total amount involved .
38b
 
39
Section 501(c)(7) organizations. Enter:
a
Initiation fees and capital contributions included on line 9.......
39a
 
b
Gross receipts, included on line 9, for public use of club facilities.....
39b
 
40a
Section 501(c)(3) organizations. Enter amount of tax imposed on the organization during the year under:
section 4911 bullet   ; section 4912 bullet   ; section 4955 bullet  
b
Section 501(c)(3) and 501(c)(4) organizations. Did the organization engage in any section 4958 excess benefittransaction during the year, or did it engage in an excess benefit transaction in a prior year that has not been reported on any of its prior Forms 990 or 990-EZ? If “Yes,” complete Schedule L, Part I ......
40b
 
No
c
Section 501(c)(3) and 501(c)(4) organizations. Enter amount of tax imposed on organization managers or disqualified persons during the year under sections 4912, 4955, and 4958...bullet  
d
Section 501(c)(3) and 501(c)(4) organizations. Enter amount of tax on line 40c reimbursed by the organization...........................bullet  
e
All organizations. At any time during the tax year, was the organization a party to a prohibited tax shelter transaction? If "Yes," complete Form 8886-T ......................
40e
 
No
41List the states with which a copy of this return is filed. bulletOH, CA, TN, KS, NY
42aThe organization's books are in care of bulletKRISTI SCHMITT BURR Telephone no. bullet (440) 834-0011
Located at bullet14525 NORTH CHESHIRE STREETBURTON,OH ZIP + 4bullet44021
b
At any time during the calendar year, did the organization have an interest in or a signature or other authority over a financial account in a foreign country (such as a bank account, securities account, or other financial account)?
Yes
No
42b
 
No
If “Yes,” enter the name of the foreign country: bullet
See the instructions for exceptions and filing requirements for Form TD F 90-22.1, Report of Foreign Bank and Financial Accounts.
c
At any time during the calendar year, did the organization maintain an office outside the U.S.?
42c
 
No
If “Yes,” enter the name of the foreign country: bullet
43.......bullet
and enter the amount of tax-exempt interest received or accrued during the tax year....bullet43
 
Yes
No
44a
Did the organization maintain any donor advised funds during the year? If "Yes," Form 990 must be completed instead of
Form 990-EZ................................
44a
 
No
b
Did the organization operate one or more hospital facilities during the year? If "Yes," Form 990 must be completedinstead of Form 990-EZ.............................
44b
 
No
c
Did the organization receive any payments for indoor tanning services during the year?.........
44c
 
No
d
If "Yes," to line 44c, has the organization filed a Form 720 to report these payments? If "No," provide an
explanation in Schedule O ............................
44d
 
 
45a
Did the organization have a controlled entity within the meaning of section 512(b)(13)?.........
45a
 
No
45b
Did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)? If "Yes," Form 990 and Schedule R may need to be completed instead of Form 990-EZ (see instructions)......................
45b
 
No
Form 990-EZ (2012)
Form 990-EZ (2012)
Page 4
Yes
No
46
Did the organization engage, directly or indirectly, in political campaign activities on behalf of or in opposition tocandidates for public office? If “Yes,” complete Schedule C, Part I. ..............
46
 
No
Part VI
Section 501(c)(3) organizations only All section 501(c)(3) organizations must answer questions 47-49b and 52, and complete the tables for lines 50 and 51 Check if the organization used Schedule O to respond to any question in this Part VI ................
Yes
No
47
Did the organization engage in lobbying activities or have a section 501(h) election in effect during the tax year? If "Yes," complete Schedule C, Part II .......................
47
 
No
48
Is the organization a school as described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E ..
48
 
No
49a
Did the organization make any transfers to an exempt non-charitable related organization?......
49a
 
No
b
If "Yes," was the related organization a section 527 organization?................
49b
 
 
50
Complete this table for the organization's five highest compensated employees (other than officers, directors, trustees and key employees) who each received more than $100,000 of compensation from the organization. If there is none, enter "None."
(a) Name and title of each employee paid more than $100,000 (b) Average
hours per week
devoted to position		 (c) Reportable compensation
(Forms W-2/1099-MISC) 		(d) Health benefits, contributions to employee benefit plans, and deferred compensation (e) Estimated amount of other compensation
NONE
f
Total number of other employees paid over $100,000 .................bullet  

51
Complete this table for the organization's five highest compensated independent contractors who each received more than $100,000 of compensation from the organization. If there is none, enter "None."
(a) Name and address of each independent contractor paid more than $100,000 (b) Type of service (c) Compensation
NONE
d
Total number of other independent contractors each receiving over $100,000..........bullet  
52
Did the organization complete Schedule A? NOTE: All Section 501(c)(3) organizations and 4947(a)(1) nonexempt charitable trusts must attach a completed Schedule A ...............bullet
Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge.
Sign Here
JumboBullet
Signature of officer Date
JumboBullet
Type or print name and title
Paid Preparer Use Only
Print/Type preparer's name
 
Preparer's signature
Date
PTIN
Firm's name bullet

Firm's EIN bullet
Firm's address bullet



Phone no.
May the IRS discuss this return with the preparer shown above? See instructions .........bullet
Form 990-EZ (2012)


Form 990-EZ, Special Condition Description:
Special Condition Description

Additional Data


Software ID:  
Software Version:  
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 See separate instructions.
OMB No. 1545-0047
2012
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
f
g
(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 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 monetary support
Yes No Yes No 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) 2012
Schedule A (Form 990 or 990-EZ) 2012
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) 2008 (b) 2009 (c) 2010 (d) 2011 (e) 2012 (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) right arrow (a) 2008 (b) 2009 (c) 2010 (d) 2011 (e) 2012 (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. Do not include gain or loss from the sale of capital assets (Explain in Part IV.)..            
11 Total support (Add lines 7 through 10).            
12
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........................................right arrow
Section C. Computation of Public Support Percentage
14
14
 
15
15
 
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) 2012
Schedule A (Form 990 or 990-EZ) 2012
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) 2008 (b) 2009 (c) 2010 (d) 2011 (e) 2012 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . 106,556 155,994 194,431 199,232 187,170 843,383
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...... 699 3,433 22,184 36,300 28,899 91,515
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. 107,255 159,427 216,615 235,532 216,069 934,898
7a Amounts included on lines 1, 2, and 3 received from disqualified persons... 99,000 98,500 149,000 102,000 45,000 493,500
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.. 99,000 98,500 149,000 102,000 45,000 493,500
8 Public support (Subtract line 7c from line 6.)           441,398
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2008 (b) 2009 (c) 2010 (d) 2011 (e) 2012 (f) Total
9 Amounts from line 6... 107,255 159,427 216,615 235,532 216,069 934,898
10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..         125 125
b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.            
c Add lines 10a and 10b.         125 125
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.).. 107,255 159,427 216,615 235,532 216,194 935,023
14
Section C. Computation of Public Support Percentage
15
15
47.210 %
16
16
36.840 %
Section D. Computation of Investment Income Percentage
17
17
0 %
18
18
 
19a
b
20
Schedule A (Form 990 or 990-EZ) 2012
Schedule A (Form 990 or 990-EZ) 2012
Page 4
Part IV
Supplemental Information. Complete this part to provide the explanations required by Part II, line 10; Part II, line 17a or 17b; and 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) 2012

Additional Data


Software ID:  
Software Version:  
Schedule B
(Form 990, 990-EZ,
or 990-PF)
Department of the Treasury
Internal Revenue Service
Schedule of Contributors
Arrow Bullet Attach to Form 990, 990-EZ, or 990-PF.
OMB No. 1545-0047
2012
Name of the organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK
Employer identification number

34-1915691
Organization type (check one):
Filers of:
Section:
Form 990 or 990-EZ





Form 990-PF




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
Special Rules
......................... Arrow Bullet   $    
Caution. An organization that is not covered by the General Rule and/or the Special Rules does not 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 Part I, line 2 of its Form 990-PF, to certify that it does not 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) (2012)

Schedule B (Form 990, 990-EZ, or 990-PF) (2012)
Page 2
Name of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK 		Employer identification number

34-1915691
Part I
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
 

     
RESTRICTED
RESTRICTED  
RESTRICTED, RESTRICTED   RESTRICTED

$RESTRICTED


(Complete Part II if there is a noncash contribution.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 

     
 
   

$  


(Complete Part II if there is a noncash contribution.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 

     
 
   

$  


(Complete Part II if there is a noncash contribution.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 

     
 
   

$  


(Complete Part II if there is a noncash contribution.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 

     
 
   

$  


(Complete Part II if there is a noncash contribution.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 

     
 
   

$  


(Complete Part II if there is a noncash contribution.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2012)

Schedule B (Form 990, 990-EZ, or 990-PF) (2012)
Page 3
Name of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK 		Employer identification number

34-1915691
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) (2012)

Schedule B (Form 990, 990-EZ, or 990-PF) (2012)
Page 4
Name of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK 		Employer identification number

34-1915691
Part III
Exclusively religious, charitable, etc., individual contributions to section 501(c)(7), (8), or (10) organizations
that total more than $1,000 for the year. 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 $1,000 or less for the year. (Enter this information once. See instructions.) Arrow Bullet$  
Use duplicate copies of Part III if additional space is needed.
(a) No.
from
Part I		 (b) Purpose of gift (c) Use 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 (c) Use 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 (c) Use 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 (c) Use 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) (2012)

Additional Data


Software ID:  
Software Version:  
SCHEDULE G (Form 990 or 990-EZ)
Department of the Treasury
Internal Revenue Service
Supplemental Information Regarding
Fundraising or Gaming Activities
Complete if the organization answered "Yes" to Form 990, Part IV, lines 17, 18, or 19, or if the organization entered more than $15,000 on Form 990-EZ, line 6a. Form 990-EZ filers are not required to complete this part. right arrowAttach to Form 990 or Form 990-EZ. right arrowSee separate instructions.
OMB No. 1545-0047
2012
Open to Public Inspection
Name of the organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK
Employer identification number

34-1915691
Part I
Fundraising Activities. Complete if the organization answered "Yes" to Form 990, Part IV, line 17.
1
Indicate whether the organization raised funds through any of the following activities. Check all that apply.
a e
b f
c g
d
2a
Did the organization have a written or oral agreement with any individual (including officers, directors, trustees
or key employees listed in Form 990, Part VII) or entity in connection with professional fundraising services?
b
If “Yes,” list the ten highest paid individuals or entities (fundraisers) pursuant to agreements under which the fundraiser is
to be compensated at least $5,000 by the organization.
(i) Name and address of individual
or entity (fundraiser) 		(ii) Activity (iii) Did fundraiser have custody or control of contributions? (iv) Gross receipts
from activity 		(v) Amount paid to
(or retained by)
fundraiser listed in
col. (i) 		(vi) Amount paid to
(or retained by)
organization
Yes No
             
             
             
             
             
             
             
             
             
             
Total .................right arrow      
3
List all states in which the organization is registered or licensed to solicit funds or has been notified it is exempt from registration or licensing.
For Paperwork Reduction Act Notice, see the Instructions for Form 990or 990-EZ.
Cat. No. 50083H
Schedule G (Form 990 or 990-EZ) 2012
Schedule G (Form 990 or 990-EZ) 2012
Page 2
Part II
Fundraising Events. Complete if the organization answered "Yes" to Form 990, Part IV, line 18, or reported more than $15,000 of fundraising event contributions and gross income on Form 990-EZ, lines 1 and 6b. List events with gross receipts greater than $5,000.
(a) Event #1

SPECIAL EVENTS
(event type) 		(b) Event #2

 
(event type) 		(c) Other events

 
(total number) 		(d) Total events
(add col. (a) through col. (c))
VerticalRevenue 1 Gross receipts . . . 28,534     28,534
2 Less: Contributions . . 15,371     15,371
3 Gross income (line 1
minus line 2) . . . 		13,163     13,163
VerticalDirectExpenses 4 Cash prizes . . .        
5 Noncash prizes . .        
6 Rent/facility costs . .        
7 Food and beverages . 9,996     9,996
8 Entertainment . . .        
9 Other direct expenses . 3,370     3,370
10 Direct expense summary. Add lines 4 through 9 in column (d) ........... right arrow 13,366
11 Net income summary. Combine line 3, column (d), and line 10. .......... right arrow -203
Part III
Gaming. Complete if the organization answered "Yes" to Form 990, Part IV, line 19, or reported more than $15,000 on Form 990-EZ, line 6a.
VerticalRevenue (a) Bingo (b) Pull tabs/Instant
bingo/progressive bingo 		(c) Other gaming (d) Total gaming (add col.(a) through col.(c))
1 Gross revenue . . . .        
VerticalDirectExpenses 2 Cash prizes . . . .        
3 Non-cash prizes . . .        
4 Rent/facility costs . . .        
5 Other direct expenses . .        
6 Volunteer labor . . .
 
 
 
7 Direct expense summary. Add lines 2 through 5 in column (d) ........... right arrow  
8 Net gaming income summary. Combine lines 1 and 7 in column (d) .......... right arrow  
9
Enter the state(s) in which the organization operates gaming activities:
a
Is the organization licensed to operate gaming activities in each of these states? ............
b
If "No," explain:
 
10a
Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? .....
b
If "Yes," explain:
 
Schedule G (Form 990 or 990-EZ) 2012
Schedule G (Form 990 or 990-EZ) 2012
Page 3
11
Does the organization operate gaming activities with nonmembers? .................
12
Is the organization a grantor, beneficiary or trustee of a trust or a member of a partnership or other entity
formed to administer charitable gaming? ..........................
13
Indicate the percentage of gaming activity operated in:
a
The organization's facility ......................
13a
 
b
An outside facility ........................
13b
 
14
Enter the name and address of the person who prepares the organization's gaming/special events books and records:
Name right arrow
Address right arrow
15a
Does the organization have a contract with a third party from whom the organization receives gaming
revenue? ......................................
b
If "Yes," enter the amount of gaming revenue received by the organization right arrow $   and the
amount of gaming revenue retained by the third party right arrow $   .
c
If "Yes," enter name and address of the third party:
Name right arrow
Address right arrow
 
 
16
Gaming manager information:
Name right arrow
Gaming manager compensation right arrow $  
Description of services provided right arrow
 
17
Mandatory distributions:
a
Is the organization required under state law to make charitable distributions from the gaming proceeds to
retain the state gaming license? ............................
b
Enter the amount of distributions required under state law distributed to other exempt organizations or spent
in the organization's own exempt activities during the tax year right arrow$  
Part IV
Supplemental Information. Complete this part to provide the explanations required by Part I, line 2b, columns (iii) and (v), and Part III, lines 9, 9b, 10b, 15b, 15c, 16, and 17b, as applicable. Also complete this part to provide any additional information (see instructions).
Identifier Return Reference Explanation
Schedule G (Form 990 or 990-EZ) 2012
Additional Data


Software ID:  
Software Version:  
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.
MediumBullet Attach to Form 990 or 990-EZ.
OMB No. 1545-0047
2012
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
OTHER EXPENSES FORM 990-EZ, PART I, LINE 16 EXPENSES PUBLIC RELATIONS 149 SUPPLIES 3,754 SOFTWARE 740 UNIFORMS 167 PROFESSIONAL MEMBERSHIP FEES 530 CONFERENCE/CONVENTION 34,177 MEMBER MEETINGS 24,602 TRAVEL 1,999 INSURANCE 2,019 CONTRACT SERVICES 119,150 SPECIAL EVENT EXPENSES 203 OFFICE EQUIPMENT 463 EDUCATIONAL MATERIALS 1,067 WEBSITE 1,032 FUNDRAISING CONSULTATION 9,500 FORGIVE RELATED PARTY REC 8,300 STRATEGIC CONSULTATION 5,000 RESEARCH AND TRIALS 7,968 VIDEO 7,988 NON-INVESTMENT DEPRECIATION 2,686 TOTAL 231,494
OTHER ASSETS FORM 990-EZ, PART II, LINE 24 PLEDGES RECEIVABLE 57,210 30,980 LESS ALLOWANCE 0 8,300 NET 57,210 22,680 OFFICE EQUIPMENT 13,427 13,578 LESS ACCUMULATED DEPRECIATION 3,813 6,499 WEBSITE 5,387 5,387 LESS ACCUMULATED AMORTIZATION 1,795 3,589 TOTAL 70,416 31,557
OTHER LIABILITIES FORM 990-EZ, PART II, LINE 26 ACCOUNTS PAYABLE AND ACCRUED EXPENSES 38,761 51,764
PRIMARY EXEMPT PURPOSE FORM 990-EZ, PART III 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 FORM 990-EZ, PART III, LINE 28 THE NETWORK ATTENDED THE FOLLOWING MEDICAL PROFESSIONAL MEETINGS IN 2012 TO EDUCATE MORE HEALTHCARE PROVIDERS ABOUT THE TOOLS FOR DIAGNOSIS, EARLY INTERVENTION AND TREATMENT /MANAGEMENT PROTOCOLS: "AMERICAN ACADEMY OF DERMATOLOGY; ADVOCACY BOOTH; PANEL SPEAKER "AMERICAN SOCIETY OF CLINICAL ONCOLOGY; ADVOCACY BOOTH "SOCIETY FOR INVESTIGATIVE DERMATOLOGY; NETWORK HOSTED "HEDGEHOG: HEAD TO TOE", MEDICAL SYMPOSIUM "INTL. SYMPOSIUM ON PED. NEURO-ONCOLOGY; ADVOCACY BOOTH & COMMENTATOR "AAD RESEARCH AGENDA CONSENSUS CONFERENCE ""ONE VOICE AGAINST CANCER" LOBBY DAY IN CONJUNCTION WITH: AMERICAN ACADEMY OF DERMATOLOGY; AMERICAN CANCER SOCIETY; LANCE ARMSTRONG FOUNDATION AND OVER 30 OTHER ORGANIZATIONS, HELD IN WASHINGTON, DC. BCCNS NETWORK WAS ABLE TO HOST THREE REGIONAL MEETINGS (RALEIGH, NC; BOIS BLANC ISLAND, MI; BURTON, OH) THIS YEAR WITH THE GRANT SUPPORT FROM NOVARTIS. WE ALSO CONDUCTED A MEDICAL SYMPOSIUM, "HEDGEHOG: HEAD TO TOE", AT THE SOCIETY FOR INVESTIGATIVE DERMATOLOGY ANNUAL MEETING. THE "YOU ARE NOT ALONE" OUTREACH PROGRAM ENCOMPASSED PEOPLE NATIONWIDE AND GLOBALLY, ESPECIALLY TARGETING UNDER-SERVED POPULATIONS AND AT-RISK COMMUNITIES - THOSE WHO WOULD OTHERWISE LACK ACCESS TO RELIABLE INFORMATION CONCERNING THIS COMPLEX ORPHAN CONDITION. THROUGH ATTENDANCE AT THE ABOVE MENTIONED REGIONAL MEMBER/PROFESSIONAL MEETINGS AND SYMPOSIUM, WE HAD DIRECT CONTACT WITH OVER 675 DISTINCT INDIVIDUALS. THE EDUCATIONAL PROGRAMMING REACHES 1,000'S MORE THROUGH DISTRIBUTION OF DISEASE SPECIFIC MATERIALS, CLINICAL TRIAL PARTICIPATION, MEDICAL PROFESSIONAL CONFERENCES, ONLINE SOCIAL MEDIA AVENUES AND DIRECT CONTACT VIA TELEPHONE, E-MAIL, WEBSITE AND IN-PERSON INTERACTION. WE IDENTIFIED AND INVOLVED 2 NEW MEDICAL ADVISORY BOARD MEMBERS. 2012 ALSO MARKED A MILESTONE AFTER ENROLLING 42 MEMBERS WHO PRESENTED OVER 2,000 BCCS FOR A SUCCESSFUL CLINICAL TRIAL, THE FDA APPROVED A NEW DRUG, VISMODEGIB, (TRADE NAME ERIVEDGE BY GENENTECH, A ROCHE GROUP) AS THE FIRST IN CLASS FOR SYSTEMIC GENETIC HEDGEHOG INHIBITOR TREATMENT FOR ADULTS WITH INVASIVE BCC. HUNDREDS OF PERSONS WITH ADVANCED AND METASTATIC BCCS, ARE NOW BENEFITTING FROM THIS CHEMO THERAPEUTIC. POST CONFERENCE AND REGIONAL MEETING EVALUATIONS WERE COMPLETED BY 82% OF ATTENDEES AND OFFERED INSIGHT FOR FUTURE PROGRAMMING AND NEEDS ASSESSMENT. SATISFACTION WAS 90 PLUS IN 92 PERCENTILE OF ATTENDEES FOR ALL VENUES. COLLATERAL MATERIALS, NEWSLETTERS, EDUCATIONAL ARTICLES, INFORMATION ON CLINICAL TRIALS, ONLINE FORUM AND SOCIAL MEDIA AVENUES ARE AVAILABLE THROUGH THE NETWORK'S ORGANIZATIONAL WEBSITE WHICH RECEIVES 6,212 UNIQUE VISITORS AND 10,029 VISITS ANNUALLY WITH 29,605 PAGE VIEWS. OUR EXECUTIVE DIRECTOR, KRISTI SCHMITT BURR, SERVES AS A MEMBER OF: FOOD AND DRUG ADMINISTRATION (FDA) PATIENT REPRESENTATIVE; COMMISSION ON DENTAL ACCREDITATION (CODA) PUBLIC MEMBER; THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM FOR THE DEPT. DEFENSE. THE SUPPORT NETWORK IS A MEMBER IN GOOD STANDING OF: DERMATOLOGY NURSES ASSOCIATION; NATIONAL ORGANIZATION FOR RARE DISORDERS; COALITION OF SKIN DISEASES; AND GENETIC ALLIANCE. OUR PROGRAM DIRECTORS AND STAFF HAVE BEEN ABLE TO EXPAND INTERACTIVE PROGRAMMING AND SERVICES BY CONNECTING AFFECTED INDIVIDUALS, THEIR FAMILIES, CAREGIVERS, AND THE PROFESSIONALS WHO CARE FOR THEM THROUGH THE CREATION OF DIDACTIC LEARNING SESSIONS. SUCCESSFUL COLLABORATION HAS ALLOWED US THE OPPORTUNITY TO: 1.FOCUS ON THE EARLY DIAGNOSIS AND TREATMENT OF CHILDREN; 2.AUTHOR & PUBLISH DIAGNOSIS AND TREATMENT PROTOCOLS IN THE AMERICAN JOURNAL OF MEDICAL GENETICS AND GENETICS IN MEDICINE THROUGH COLLABORATION EFFORTS WITH: DR. VIRGINIA KIMONIS, UNIV. OF CA, IRVINE; DR. ALANNA BREE, TX;& DR. MAULIK SHAH, FL; 3.AUGMENT DIRECT COMMUNICATION AND MEMBER OUTREACH INCREASING OUR FAMILY MEMBERSHIP BY 62 NEW FAMILIES THIS YEAR (EACH WITH MULTIPLE AFFECTED FAMILY MEMBERS); 4.FOSTER RESPONSIBILITY THROUGH UNDERSTANDING OF TREATMENT OPTIONS; 5.HOST THREE EDUCATIONAL RETREATS AND MEMBER MEETINGS IN 2012, REACHING MANY, WHO IN THE PAST HAVE NOT BEEN ABLE TO ATTEND DUE TO FINANCIAL CONSTRAINTS; 6.ATTEND PROFESSIONAL MEETINGS TO EDUCATE CLINICIANS, RESEARCHERS, PROFESSORS AND DEPARTMENT CHAIRS AND SUPPLEMENT THEIR AWARENESS OF THIS CONDITION, MANIFESTATIONS, TREATMENT OPTIONS AND CLINICAL TRIAL OPPORTUNITIES. THESE EXPERIENCES HAVE PROVIDED US WITH INVALUABLE CONTACTS AND RESOURCES.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990 or 990-EZ) 2012

Additional Data


Software ID:  
Software Version:  

TY 2012 CompensationExplanation
Name:
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK
EIN: 34-1915691
Person Name Explanation
MICHAEL RAINEN  
WILLIAM GINN  
BRYANT BRADLEY  
JULIE BRENEISER  
KRISTI SCHMITT BURR AN UNRELATED ENTITY EMPLOYS THE INDIVIDUALS WHO DIRECT THE ACTIVITIES OF THE ORGANIZATION AND THEREFORE THERE ARE NO W2S 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 REIMBURSEMENTS FOR COMPENSATIONARE CLASSIFIED AS CONTRACTED SERVICES IN SCHEDULE O TOTAL 2012 COMPENSATION PAID TO THE EXECUTIVE DIRECTOR WAS 48000 HOSPITALIZATION AND OTHER BENEFITS PAID ON BEHALF OF THE EXECUTIVE DIRECTOR AMOUNTED TO 13910 FOR 2012
CINDY SHELLEY  
ALAN ROTH  
ELLEN MCCABE  
KATHLYN ROTH  
RIC JONES