TY 2013 Form 990

- TIN:

Form990

Department of the Treasury
Internal Revenue Service

Return of Organization Exempt From Income Tax

Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except private foundations)

Do not enter Social Security numbers on this form as it may be made public. By law, the IRS

generally cannot redact the information on the form.

Information about Form 990 and its instructions is at www.IRS.gov/form990.

OMB No. 1545-0047

2013

Open to Public Inspection

A For the 2013 calendar year, or tax year beginning 01-01-2013 , 2013, and ending 12-31-2013

BCheck if applicable: Address change Name change Initial return Terminated Amended return Application pending

CName of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK

Doing Business As

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 province, country, and ZIP or foreign postal code
BURTON, OH44021

D Employer identification number

34-1915691

E Telephone number

G Gross receipts $ 259,869

F Name and address of principal officer:
KRISTI SCHMITT BURR
P O BOX 321
BURTON,OH44021

Tax-exempt status: 501(c)(3) 501(c) ( ) LeftBullet

(insert no.) 4947(a)(1) or 527

Website:

WWW.BCCNS.ORG

H(a)

Is this a group return for
subordinates? Yes No

H(b)

Are all subordinates
included?

Yes No

If "No," attach a list. (see instructions)

H(c)

Group exemption number MediumBullet

K Form of organization: Corporation Trust Association Other MediumBullet

L Year of formation: 2000

M State of legal domicile: OH

Part I

Summary

1	Briefly describe the organization’s mission or most significant activities: 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.
2	Check this box
3	Number of voting members of the governing body (Part VI, line 1a) ........	3	8
4	Number of independent voting members of the governing body (Part VI, line 1b) .....	4	8
5	Total number of individuals employed in calendar year 2013 (Part V, line 2a) ......	5	0
6	Total number of volunteers (estimate if necessary) .............	6	30
7a	Total unrelated business revenue from Part VIII, column (C), line 12 ........	7a	0
b	Net unrelated business taxable income from Form 990-T, line 34 .........	7b

		Prior Year	Current Year
8	Contributions and grants (Part VIII, line 1h) .........	155,272	259,631
9	Program service revenue (Part VIII, line 2g) .........	15,736	0
10	Investment income (Part VIII, column (A), lines 3, 4, and 7d ) ....	125	14
11	Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e)	-203	224
12	Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)...................	170,930	259,869
13	Grants and similar amounts paid (Part IX, column (A), lines 1–3 )...		0
14	Benefits paid to or for members (Part IX, column (A), line 4).....		0
15	Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10)		0
16a	Professional fundraising fees (Part IX, column (A), line 11e).....		0
b	Total fundraising expenses (Part IX, column (D), line 25) 13,555
17	Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e)....	265,410	204,989
18	Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25)	265,410	204,989
19	Revenue less expenses. Subtract line 18 from line 12.......	-94,480	54,880
		Beginning of Current Year	End of Year
20	Total assets (Part X, line 16).............	41,775	83,263
21	Total liabilities (Part X, line 26).............	51,764	38,372
22	Net assets or fund balances. Subtract line 21 from line 20.....	-9,989	44,891

Part II

Signature Block

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

	Signature of officer	Date

	Type or print name and title

Paid Preparer Use Only

Print/Type preparer's name

Preparer's signature

Date

Check if
self-employed

PTIN

Firm's name MediumBullet

Firm's EIN MediumBullet

Firm's address MediumBullet

Phone no.

May the IRS discuss this return with the preparer shown above? (see instructions) ............YesNo

For Paperwork Reduction Act Notice, see the separate instructions.

Cat. No. 11282Y

Form 990 (2013)

Page 2

Part III

Statement of Program Service Accomplishments

Check if Schedule O contains a response or note to any line in this Part III ..............

Briefly describe the 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.

Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ? ...................... Yes No

If "Yes," describe these new services on Schedule O.

Did the organization cease conducting, or make significant changes in how it conducts, any program services? ............................ Yes No

If "Yes," describe these changes on Schedule O.

Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported.


4a	(Code: ) (Expenses $ 174,302 including grants of $ ) (Revenue $ )
	THE NETWORK ATTENDED THE FOLLOWING MEDICAL PROFESSIONAL MEETINGS IN 2013 TO EDUCATE MORE HEALTHCARE PROVIDERS ABOUT THE TOOLS FOR DIAGNOSIS, EARLY INTERVENTION AND TREATMENT /MANAGEMENT PROTOCOLS: "AMERICAN ACADEMY OF DERMATOLOGY (AAD); ADVOCACY BOOTH; PANEL SPEAKER "AMERICAN SOCIETY OF CLINICAL ONCOLOGY (ASCO); ADVOCACY BOOTH "ATTENDED AND PARTICIPATED IN THE INAUGURAL MEETING OF THE PEDIATRIC DERMATOLOGY RESEARCH ALLIANCE (PEDRA). MET WITH RESEARCHERS INTERESTED IN HELPING TO FACILITATE THE FIRST BCCNS REGISTRY. "AMERICAN COLLEGE OF MEDICAL GENETICS (ACMG); ADVOCACY BOOTH AND REPRESENTATION "AMERICAN COLLEGE OF ORAL & MAXILLOFACIAL SURGEONS (ACOMS); ADVOCACY BOOTH; CONTINUING ED. "AMERICAN SOCIETY MOHS SURGEONS (ASMS); ADVOCACY BOOTH "AAD & AADA 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 HOSTED A WELL-RECEIVED, ENTHUSIASTICALLY ATTENDED, ANNUAL REGIONAL MEETING IN FORT WORTH, TX IN 2013, WITH GRANT SUPPORT FROM GENENTECH. 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 HOW TO MANAGE AND NAVIGATE THIS COMPLEX ORPHAN CONDITION. THROUGH ATTENDANCE AT THE ABOVE MENTIONED REGIONAL MEMBER/PROFESSIONAL MEETINGS, WE HAD DIRECT CONTACT WITH OVER 760 DISTINCT INDIVIDUALS; OVER 14,800 RANDOM ATTENDEES. 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. HUNDREDS OF PERSONS WITH ADVANCED AND METASTATIC BCCS ARE NOW BENEFITTING FROM NEWLY FDA APPROVED HEDGEHOG INHIBITOR DRUGS BOTH THROUGH CLINICAL TRIALS AND PRESCRIPTION USE. WE HAVE THREE NEW RESEARCH INITIATIVES ON THE HORIZON FOR 2014 INCLUDING: ILLUMINATING NOVEL TARGETS FOR BCC AND SCC CANCER THERAPY, DR. ADDY ALT-HOLLAND, TUFTS UNIVERSITY; BCCNS CLINICAL CONSORTIA & PATIENT REGISTRY, DR. JOYCE TENG, STANFORD UNIVERSITY & DR. AMY PALLER, NORTHWESTERN UNIVERSITY; A RESEARCH STUDY FOR THE APPLICATION OF COMPLEX ADAPTIVE SYSTEMS RESEARCH METHODOLOGY TO BASAL CELL NEVUS SYNDROME, DR. JAMES SOLOMON, AMERIDERM RESEARCH & THE UNIVERSITY OF CENTRAL FLORIDA. POST CONFERENCE AND REGIONAL MEETING EVALUATIONS WERE COMPLETED BY 93% OF ATTENDEES AND OFFERED INSIGHT FOR FUTURE PROGRAMMING AND NEEDS ASSESSMENT. SATISFACTION WAS 93 PLUS IN 95 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 RECEIVED 8,309 UNIQUE VISITORS AND 12,984 VISITS ANNUALLY WITH 36,087 PAGE VIEWS, AN AVERAGE OF 22% HIGHER THAN 2012. 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 AS A CONSUMER REVIEWER FOR GRANT APPLICATIONS; COALITION OF SKIN DISEASES, (CURRENTLY SERVING AS PRESIDENT OF CSD). ADMINISTRATOR, SHEILA LAROSA, BUILDS CONSTITUENT RELATIONS, MANAGES DAY-TO -DAY OPERATIONS, AND COORDINATES ALL COMMUNICATIONS, SCHEDULES APPOINTMENTS, TRIAGES MEMBER NEEDS FOR SERVICES AND COORDINATES. 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 THE QUARTERLY ADVOCATE NEWSLETTER WHICH IS DISTRIBUTED 4 TIMES/YEAR BOTH ELECTRONICALLY AND HARD COPY TO 1879 FAMILIES, CAREGIVERS AND HEALTH CARE PROFESSIONALS WHO TURN TO US FOR SUPPORT AND ASSISTANCE; 3.AUGMENT DIRECT COMMUNICATION AND MEMBER OUTREACH INCREASING OUR FAMILY MEMBERSHIP BY 44 NEW FAMILIES THIS YEAR (EACH WITH MULTIPLE AFFECTED FAMILY MEMBERS); 4.FOSTER RESPONSIBILITY THROUGH UNDERSTANDING OF TREATMENT OPTIONS; 5.HOST AN EDUCATIONAL RETREAT AND MEMBER MEETING IN FORT WORTH, TX 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, SUPPLEMENTING THEIR AWARENESS OF THIS CONDITION, MANIFESTATIONS, TREATMENT OPTIONS AND CLINICAL TRIAL OPPORTUNITIES. THESE EXPERIENCES HAVE PROVIDED US WITH INVALUABLE CONTACTS AND RESOURCES. 7.DISTRIBUTED 24 BAND-AIDE BUDDIES (STUFFED TOYS TO COMFORT CHILDREN) TO ACCOMPANY NEWLY DIAGNOSED CHILDREN AFFECTED BY THE CONDITION TO APPOINTMENTS, SURGERIES, & PROCEDURES. IT IS ABUNDANTLY APPARENT THAT OUR PROGRAMS AND SERVICES ARE EFFECTIVE EFFORTS IN ORDER TO EDUCATE AFFECTED INDIVIDUALS, FAMILIES, CAREGIVERS AND MEDICAL PROFESSIONALS AND PROVIDE A VITAL LINK TO ACCESSING: CURRENT TREATMENT OPTIONS; EMOTIONAL SUPPORT TO BETTER MANAGE THE BURDEN OF CHRONIC ILLNESS; AND INFORMATION ON CURRENTLY AVAILABLE CLINICAL TRIAL OPPORTUNITIES. WE WILL CONTINUE TO ENGAGE THESE INITIATIVES THROUGHOUT 2014.

4b	(Code: ) (Expenses $ including grants of $ ) (Revenue $ )












4c	(Code: ) (Expenses $ including grants of $ ) (Revenue $ )












4d	Other program services (Describe in Schedule O.)
	(Expenses $ including grants of $ ) (Revenue $ )
4e	Total program service expenses174,302

Form 990 (2013)

Page 3

Part IV

Checklist of Required Schedules

Yes

Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule A Click to see attachment

........................

Yes

Is the organization required to complete Schedule B, Schedule of Contributors (see instructions)? Click to see attachment

...

Yes

Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office? If "Yes," complete Schedule C, Part I..........

Section 501(c)(3) organizations. 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........

Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Revenue Procedure 98-19? If "Yes," complete Schedule C,
Part III............................

Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts? If "Yes," complete Schedule D, Part I Click to see attachment

........................

Did the organization receive or hold a conservation easement, including easements to preserve open space,
the environment, historic land areas, or historic structures? If "Yes," complete Schedule D, Part II Click to see attachment

...

Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes," complete Schedule D, Part III Click to see attachment

....................

Did the organization report an amount in Part X, line 21 for escrow or custodial account liability; serve as a custodian for amounts not listed in Part X; or provide credit counseling, debt management, credit repair, or debt negotiation services? If "Yes," complete Schedule D, Part IV Click to see attachment

..............

Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi-endowments? If "Yes," complete Schedule D, Part V Click to see attachment

......

If the organization’s answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X as applicable.

Did the organization report an amount for land, buildings, and equipment in Part X, line 10?
If "Yes," complete Schedule D, Part VI. Click to see attachment

...................

11a

Yes

Did the organization report an amount for investments—other securities in Part X, line 12 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VII Click to see attachment

.......

11b

Did the organization report an amount for investments—program related in Part X, line 13 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIII Click to see attachment

.......

11c

Did the organization report an amount for other assets in Part X, line 15 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part IX Click to see attachment

............

11d

Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part X Click to see attachment

11e

Did the organization’s separate or consolidated financial statements for the tax year include a footnote that addresses the organization’s liability for uncertain tax positions under FIN 48 (ASC 740)? If "Yes," complete Schedule D, Part X Click to see attachment

.........................

11f

12a

Did the organization obtain separate, independent audited financial statements for the tax year?
If "Yes," complete Schedule D, Parts XI and XII Click to see attachment

.................

12a

Was the organization included in consolidated, independent audited financial statements for the tax year? If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI and XII is optional Click to see attachment

12b

Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E....

14a

Did the organization maintain an office, employees, or agents outside of the United States?.....

14a

Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more? If "Yes," complete Schedule F, Parts I and IV.........

14b

Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or other assistance to or for any foreign organization? If “Yes,” complete Schedule F, Parts II and IV

Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or other assistance to or for foreign individuals? If “Yes,” complete Schedule F, Parts III and IV...

Did the organization report a total of more than $15,000 of expenses for professional fundraising services on Part IX, column (A), lines 6 and 11e? If "Yes," complete Schedule G, Part I (see instructions)....

Did the organization report more than $15,000 total of fundraising event gross income and contributions on Part VIII, lines 1c and 8a? If "Yes," complete Schedule G, Part II............

Did the organization report more than $15,000 of gross income from gaming activities on Part VIII, line 9a? If "Yes," complete Schedule G, Part III...................

20a

Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H....

20a

If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?

20b

Form 990 (2013)

Page 4

Part IV

Checklist of Required Schedules (continued)

Did the organization report more than $5,000 of grants or other assistance to any domestic organization or government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II...

Did the organization report more than $5,000 of grants or other assistance to individuals in the United States on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........

Did the organization answer "Yes" to Part VII, Section A, line 3, 4, or 5 about compensation of the organization’s current and former officers, directors, trustees, key employees, and highest compensated employees? If "Yes," complete Schedule J.......................

24a

Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002? If “Yes,” answer lines 24b through 24d and complete Schedule K. If “No,” go to line 25a................

24a

Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...

24b

Did the organization maintain an escrow account other than a refunding escrow at any time during the year
to defease any tax-exempt bonds?......................

24c

Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year?...

24d

25a

Section 501(c)(3) and 501(c)(4) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I........

25a

Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization’s prior Forms 990 or 990-EZ? If "Yes," complete Schedule L, Part I...................

25b

Did the organization report any amount on Part X, line 5, 6, or 22 for receivables from or payables to any current or former officers, directors, trustees, key employees, highest compensated employees, or disqualified persons? If so, complete Schedule L, Part II....................

Did the organization provide a grant or other assistance to an officer, director, trustee, key employee, substantial contributor or employee thereof, a grant selection committee member, or to a 35% controlled entity or family member of any of these persons? If "Yes," complete Schedule L, Part III.........

Was the organization a party to a business transaction with one of the following parties (see Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions):

A current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L, Part IV ..........................

28a

A family member of a current or former officer, director, trustee, or key employee? If "Yes,"
complete Schedule L, Part IV.....................

28b

An entity of which a current or former officer, director, trustee, or key employee (or a family member thereof) was an officer, director, trustee, or direct or indirect owner? If "Yes," complete Schedule L, Part IV...

28c

Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M..

Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M.............

Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N,
Part I...........................

Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II......................

Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If "Yes," complete Schedule R, Part I........

Was the organization related to any tax-exempt or taxable entity? If "Yes," complete Schedule R, Part II, III, or IV, and Part V, line 1........................

35a

Did the organization have a controlled entity within the meaning of section 512(b)(13)?

35a

If ‘Yes’ to line 35a, 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," complete Schedule R, Part V, line 2...

35b

Section 501(c)(3) organizations. Did the organization make any transfers to an exempt non-charitable related organization? If "Yes," complete Schedule R, Part V, line 2.............

Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes? If "Yes," complete Schedule R, Part VI

Did the organization complete Schedule O and provide explanations in Schedule O for Part VI, lines 11b and 19? Note. All Form 990 filers are required to complete Schedule O. ............

Yes

Form 990 (2013)

Page 5

Part V

Statements Regarding Other IRS Filings and Tax Compliance

Check if Schedule O contains a response or note to any line in this Part V ..............

Yes

Enter the number reported in Box 3 of Form 1096 Enter -0- if not applicable ..

Enter the number of Forms W-2G included in line 1a. Enter -0- if not applicable .

Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................

Yes

Enter the number of employees reported on Form W-3, Transmittal of Wage and
Tax Statements, filed for the calendar year ending with or within the year covered by this return ..................

If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
Note. If the sum of lines 1a and 2a is greater than 250, you may be required to e-file (see instructions)

Did the organization have unrelated business gross income of $1,000 or more during the year?...

If “Yes,” has it filed a Form 990-T for this year? If “No” to line 3b, provide an explanation in Schedule O...

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)?..........................

If "Yes," enter the name of the foreign country: MediumBullet

See instructions for filing requirements for Form TD F 90-22.1, Report of Foreign Bank and Financial Accounts.

Was the organization a party to a prohibited tax shelter transaction at any time during the tax year?..

Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?

If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ............

Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible as charitable contributions?...

If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible?........................

Organizations that may receive deductible contributions under section 170(c).

Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor?....................

If "Yes," did the organization notify the donor of the value of the goods or services provided?.....

Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282?...........................

If "Yes," indicate the number of Forms 8282 filed during the year ....

Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?............................

Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract?..

If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required?............................

If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C?..........................

Sponsoring organizations maintaining donor advised funds and section 509(a)(3) supporting organizations. Did the supporting organization, or a donor advised fund maintained by a sponsoring organization, have excess business holdings at any time during the year?............

Sponsoring organizations maintaining donor advised funds.

Did the organization make any taxable distributions under section 4966?..........

Did the organization make a distribution to a donor, donor advisor, or related person?.......

Section 501(c)(7) organizations. Enter:

Initiation fees and capital contributions included on Part VIII, line 12 ...

10a

Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities

10b

Section 501(c)(12) organizations. Enter:

Gross income from members or shareholders .........

11a

Gross income from other sources (Do not net amounts due or paid to other sources against amounts due or received from them.) ..........

11b

12a

Section 4947(a)(1) non-exempt charitable trusts. Is the organization filing Form 990 in lieu of Form 1041?

12a

If "Yes," enter the amount of tax-exempt interest received or accrued during the year. ....................

12b

Section 501(c)(29) qualified nonprofit health insurance issuers.

Is the organization licensed to issue qualified health plans in more than one state?
Note. See the instructions for additional information the organization must report on Schedule O.

13a

Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans ....

13b

Enter the amount of reserves on hand ............

13c

14a

Did the organization receive any payments for indoor tanning services during the tax year?.....

14a

If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O..

14b

Form 990 (2013)

Page 6

Part VI

Governance, Management, and Disclosure For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.

Check if Schedule O contains a response or note to any line in this Part VI ..............

Section A. Governing Body and Management

Yes

Enter the number of voting members of the governing body at the end of the tax year .....................

If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.

Enter the number of voting members included in line 1a, above, who are independent ...................

Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other officer, director, trustee, or key employee? .................

Yes

Did the organization delegate control over management duties customarily performed by or under the direct supervision of officers, directors or trustees, or key employees to a management company or other person? .

Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? ...........................

Did the organization become aware during the year of a significant diversion of the organization’s assets? .

Did the organization have members or stockholders? ................

Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or more members of the governing body? ....................

Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? ...................

Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:

The governing body? .........................

Yes

Each committee with authority to act on behalf of the governing body? ............

Yes

Is there any officer, director, trustee, or key employee listed in Part VII, Section A, who cannot be reached at the organization’s mailing address? If "Yes," provide the names and addresses in Schedule O.......

Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)

Yes

10a

Did the organization have local chapters, branches, or affiliates? ............

10a

If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes?

10b

11a

Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? ............................

11a

Describe in Schedule O the process, if any, used by the organization to review this Form 990. .....

12a

Did the organization have a written conflict of interest policy? If "No," go to line 13.......

12a

Yes

Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ..........................

12b

Yes

Did the organization regularly and consistently monitor and enforce compliance with the policy? If "Yes," describe in Schedule O how this was done.......................

12c

Yes

Did the organization have a written whistleblower policy? ...............

Did the organization have a written document retention and destruction policy? .........

Yes

Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision?

The organization’s CEO, Executive Director, or top management official ...........

15a

Yes

Other officers or key employees of the organization ................

15b

If "Yes" to line 15a or 15b, describe the process in Schedule O (see instructions).

16a

Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year? ......................

16a

If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization’s exempt status with respect to such arrangements? ............

16b

Section C. Disclosure

List the States with which a copy of this Form 990 is required to be filed MediumBullet

OH , NY , CA , TN , KS

Section 6104 requires an organization to make its Form 1023 (or 1024 if applicable), 990, and 990-T (501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply.

Own website Another's website Upon request Other (explain in Schedule O)

Describe in Schedule O whether (and if so, how) the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year.

State the name, physical address, and telephone number of the person who possesses the books and records of the organization:
MediumBullet

KRISTI SCHMITT BURR14525 NORTH CHESHIRE STREETBURTONOH44021 (440) 834-0011

Form 990 (2013)

Page 7

Part VII

Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors

Check if Schedule O contains a response or note to any line in this Part VII ..............

Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees

1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
RoundBullet

List all of the organization’s current officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.

List all of the organization’s current key employees, if any. See instructions for definition of "key employee."

List the organization’s five current highest compensated employees (other than an officer, director, trustee or key employee)
who received reportable compensation (Box 5 of Form W-2 and/or Box 7 of Form 1099-MISC) of more than $100,000 from the
organization and any related organizations.

List all of the organization’s former officers, key employees, or highest compensated employees who received more than $100,000
of reportable compensation from the organization and any related organizations.

List all of the organization’s former directors or trustees that received, in the capacity as a former director or trustee of the
organization, more than $10,000 of reportable compensation from the organization and any related organizations.

List persons in the following order: individual trustees or directors; institutional trustees; officers; key employees; highest
compensated employees; and former such persons.

Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee.

(A) Name and Title	(B) Average hours per week (list any hours for related organizations below dotted line)	(C) Position (do not check more than one box, unless person is both an officer and a director/trustee)		(D) Reportable compensation from the organization (W- 2/1099-MISC)	(E) Reportable compensation from related organizations (W- 2/1099-MISC)	(F) Estimated amount of other compensation from the organization and related organizations
(A) Name and Title
(1) MICHAEL RAINEN........................................................................ TRUSTEE	2.00 .......................	X		0	0	0
(2) WILLIAM GINN........................................................................ PRESIDENT	10.00 .......................	X	X	0	0	0
(3) BRYANT BRADLEY........................................................................ TRUSTEE	2.00 .......................	X		0	0	0
(4) JULIE BRENEISER........................................................................ TRUSTEE	2.00 .......................	X		0	0	0
(5) ALAN ROTH........................................................................ TRUSTEE	2.00 .......................	X		0	0	0
(6) ELLEN MCCABE........................................................................ TREASURER	2.00 .......................	X	X	0	0	0
(7) KATHLYN ROTH........................................................................ SECRETARY	2.00 .......................	X	X	0	0	0
(8) RIC JONES........................................................................ TRUSTEE	2.00 .......................	X		0	0	0
(9) KRISTI SCHMITT BURR........................................................................ EXECUTIVE DI	40.00 .......................		X	0	0	0

Form 990 (2013)

Page 8

Part VII

Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (continued)

(A) Name and Title	(B) Average hours per week (list any hours for related organizations below dotted line)	(C) Position (do not check more than one box, unless person is both an officer and a director/trustee)						(D) Reportable compensation from the organization (W- 2/1099-MISC)	(E) Reportable compensation from related organizations (W- 2/1099-MISC)	(F) Estimated amount of other compensation from the organization and related organizations
(A) Name and Title

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

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

Yes

Did the organization list any former officer, director or trustee, key employee, or highest compensated employee on line 1a? If "Yes," complete Schedule J for such individual ..............

For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000? If "Yes," complete Schedule J for such individual...........................

Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization? If "Yes," complete Schedule J for such person ........

Section B. Independent Contractors

Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization’s tax year.

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





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

Form 990 (2013)

Page 9

Part VIII

Statement of Revenue

Check if Schedule O contains a response or note to any line in this Part VIII .............

				(A) Total revenue	(B) Related or exempt function revenue	(C) Unrelated business revenue	(D) Revenue excluded from tax under sections 512-514
1a	Federated campaigns..1a
b	Membership dues....1b
c	Fundraising events....1c
d	Related organizations...1d
e	Government grants (contributions)1e

f	All other contributions, gifts, grants, and similar amounts not included above1f		259,631

g	Noncash contributions included in lines 1a-1f:$
h	Total. Add lines 1a-1f.......			259,631
			Business Code
2a
b
c
d
e
f	All other program service revenue .
g	Total. Add lines 2a–2f........
3	Investment income (including dividends, interest, and other similar amounts).......			14			14
4	Income from investment of tax-exempt bond proceeds..
5	Royalties...........
		(i) Real	(ii) Personal
6a	Gross rents
b	Less: rental expenses
c	Rental income or (loss)
d	Net rental income or (loss).......
		(i) Securities	(ii) Other
7a	Gross amount from sales of assets other than inventory
b	Less: cost or other basis and sales expenses
c	Gain or (loss)
d	Net gain or (loss)..........
8a	Gross income from fundraising events (not including $ of contributions reported on line 1c). See Part IV, line 18 ..
	a
b	Less: direct expenses ...b
c	Net income or (loss) from fundraising events..
9a	Gross income from gaming activities. See Part IV, line 19 ...
	a
b	Less: direct expenses ...b
c	Net income or (loss) from gaming activities...
10a	Gross sales of inventory, less returns and allowances .
	a
b	Less: cost of goods sold ..b
c	Net income or (loss) from sales of inventory..
Miscellaneous Revenue			Business Code
11a	MISCELLANEOUS			224	224
b
c
d	All other revenue ....
e	Total. Add lines 11a–11d ......			224
12	Total revenue. See Instructions......			259,869	224		14

Form 990 (2013)

Page 10

Part IX

Statement of Functional Expenses

Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).Check if Schedule O contains a response or note to any line in this Part IX ...............

Do not include amounts reported on lines 6b, 7b, 8b, 9b, and 10b of Part VIII.		(A) Total expenses	(B) Program service expenses	(C) Management and general expenses	(D) Fundraising expenses
1	Grants and other assistance to governments and organizations in the United States. See Part IV, line 21
2	Grants and other assistance to individuals in the United States. See Part IV, line 22
3	Grants and other assistance to governments, organizations, and individuals outside the United States. See Part IV, lines 15 and 16
4	Benefits paid to or for members
5	Compensation of current officers, directors, trustees, and key employees ....
6	Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) ....
7	Other salaries and wages
8	Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) ....
9	Other employee benefits .......
10	Payroll taxes ...........
11	Fees for services (non-employees):
a	Management ......
b	Legal .........
c	Accounting ...........	2,992		2,992
d	Lobbying ...........
e	Professional fundraising services. See Part IV, line 17
f	Investment management fees ......
g	Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O) ........	13,415	2,880		10,535
12	Advertising and promotion ....	4,924	4,826		98
13	Office expenses .......	17,760	16,794	370	596
14	Information technology ......	663	663
15	Royalties ..
16	Occupancy ...........	9,057	7,894	1,163
17	Travel ............	91	91
18	Payments of travel or entertainment expenses for any federal, state, or local public officials ......
19	Conferences, conventions, and meetings ....	25,966	25,966
20	Interest ...........
21	Payments to affiliates .......
22	Depreciation, depletion, and amortization .....	4,484	3,811	673
23	Insurance ..............	2,032	1,727	305
24	Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a	CONTRACT SERVICES	116,286	102,331	11,629	2,326
b	RESEARCH AND TRIALS	1,488	1,488
c	EDUCATIONAL MATERIALS	1,468	1,468
d	VIDEO	1,389	1,389
e	All other expenses	2,974	2,974
25	Total functional expenses. Add lines 1 through 24e	204,989	174,302	17,132	13,555
26	Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here if following SOP 98-2 (ASC 958-720).

Form 990 (2013)

Page 11


				(A) Beginning of year		(B) End of year
1	Cash–non-interest-bearing .............			417	1	387
2	Savings and temporary cash investments .........			9,801	2	76,430
3	Pledges and grants receivable, net ...........			22,680	3	387
4	Accounts receivable, net .............				4
5	Loans and other receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of Schedule L ..................
					5
6	Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), persons described in section 4958(c)(3)(B), and contributing employers and sponsoring organizations of section 501(c)(9) voluntary employees' beneficiary organizations (see instructions) Complete Part II of Schedule L
					6
7	Notes and loans receivable, net .............				7
8	Inventories for sale or use ..............				8
9	Prepaid expenses and deferred charges ..........				9
10a	Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D	10a	13,578
b	Less: accumulated depreciation .....	10b	9,185	7,079	10c	4,393
11	Investments—publicly traded securities ..........				11
12	Investments—other securities. See Part IV, line 11 .....				12
13	Investments—program-related. See Part IV, line 11 .....				13
14	Intangible assets ...............			1,798	14
15	Other assets. See Part IV, line 11 ...........				15	1,666
16	Total assets. Add lines 1 through 15 (must equal line 34)......			41,775	16	83,263
17	Accounts payable and accrued expenses .........			51,764	17	38,372
18	Grants payable .................				18
19	Deferred revenue ................				19
20	Tax-exempt bond liabilities .............				20
21	Escrow or custodial account liability. Complete Part IV of Schedule D..				21
22	Loans and other payables to current and former officers, directors, trustees, key employees, highest compensated employees, and disqualified
	persons. Complete Part II of Schedule L..........				22
23	Secured mortgages and notes payable to unrelated third parties ..				23
24	Unsecured notes and loans payable to unrelated third parties ....				24
25	Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17-24). Complete Part X of Schedule D....................				25
26	Total liabilities. Add lines 17 through 25.........			51,764	26	38,372
	Organizations that follow SFAS 117 (ASC 958), check here and complete lines 27 through 29, and lines 33 and 34.
27	Unrestricted net assets ..............			-102,673	27	44,891
28	Temporarily restricted net assets ...........			92,684	28
29	Permanently restricted net assets ...........				29
	Organizations that do not follow SFAS 117 (ASC 958), check here and complete lines 30 through 34.
30	Capital stock or trust principal, or current funds ........				30
31	Paid-in or capital surplus, or land, building or equipment fund .....				31
32	Retained earnings, endowment, accumulated income, or other funds				32
33	Total net assets or fund balances ...........			-9,989	33	44,891
34	Total liabilities and net assets/fund balances ........			41,775	34	83,263

Form 990 (2013)

Page 12

Part XI

Reconcilliation of Net Assets

Check if Schedule O contains a response or note to any line in this Part XI ..............

Total revenue (must equal Part VIII, column (A), line 12) ............

259,869

Total expenses (must equal Part IX, column (A), line 25) ............

204,989

Revenue less expenses. Subtract line 2 from line 1 ..............

54,880

Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..

-9,989

Net unrealized gains (losses) on investments ...............

Donated services and use of facilities .................

Investment expenses .....................

Prior period adjustments .....................

Other changes in net assets or fund balances (explain in Schedule O) ........

Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 33, column (B))

44,891

Part XII

Financial Statements and Reporting

Check if Schedule O contains a response or note to any line in this Part XII .............

Yes

Accounting method used to prepare the Form 990: Cash Accrual Other
If the organization changed its method of accounting from a prior year or checked "Other," explain in
Schedule O.

Were the organization’s financial statements compiled or reviewed by an independent accountant?

If ‘Yes,’ check a box below to indicate whether the financial statements for the year were compiled or reviewed on a separate basis, consolidated basis, or both:

Separate basis Consolidated basis Both consolidated and separate basis

Were the organization’s financial statements audited by an independent accountant?

If ‘Yes,’ check a box below to indicate whether the financial statements for the year were audited on a separate basis, consolidated basis, or both:

Separate basis Consolidated basis Both consolidated and separate basis

If "Yes," to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight of the audit, review, or compilation of its financial statements and selection of an independent accountant?

If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.

As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Single Audit Act and OMB Circular A-133?

If "Yes," did the organization undergo the required audit or audits? If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits.

Form 990 (2013)

Form 990, Special Condition Description:

Special Condition Description

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE A
(Form 990 or 990EZ)

Department of the Treasury
Internal Revenue Service

Public Charity Status and Public Support

Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.

Attach to Form 990 or Form 990-EZ. right arrow

See separate instructions.
right arrow

Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.

OMB No. 1545-0047

2013

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.)

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

A school described in section 170(b)(1)(A)(ii). (Attach Schedule E.)

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

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

An organization operated for the benefit of a college or university owned or operated by a governmental unit described in

section 170(b)(1)(A)(iv). (Complete Part II.)

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

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

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

An organization that normally receives: (1) more than 331/3% of its support from contributions, membership fees, and gross

receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 331/3% of

its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses

acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)

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

An organization organized and operated exclusively for the benefit of, to perform the functions of, or to carry out the purposes of one or more publicly supported organizations described in section 509(a)(1) or section 509(a)(2). See section 509(a)(3). Check the box that describes the type of supporting organization and complete lines 11e through 11h.

Type I

Type II

Type III - Functionally integrated

Type III - Non-functionally integrated

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).

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 ..................................................

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

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)

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

(i) Name of supported organization	(ii) EIN	(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
(i) Name of supported organization	(ii) EIN	Yes	No	Yes	No	Yes	No	(vii) Amount of monetary support


Total

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

Cat. No. 11285F

Schedule A (Form 990 or 990-EZ) 2013

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)		(a) 2009	(b) 2010	(c) 2011	(d) 2012	(e) 2013	(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) 2009	(b) 2010	(c) 2011	(d) 2012	(e) 2013	(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).

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

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

Public support percentage for 2013 (line 6, column (f) divided by line 11, column (f)) .........

Public support percentage for 2012 Schedule A, Part II, line 14 ...............

16a

33 1/3% support test—2013. If the organization did not check the box on line 13, and line 14 is 33 1/3% or more, check this box
and stop here. The organization qualifies as a publicly supported organization ....................... right arrow

33 1/3% support test—2012. If the organization did not check a box on line 13 or 16a, and line 15 is 33 1/3% or more, check this
box and stop here. The organization qualifies as a publicly supported organization ..................... right arrow

17a

10%-facts-and-circumstances test—2013. 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 ..................................................... right arrow

10%-facts-and-circumstances test—2012. 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 ................................................ right arrow

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

Schedule A (Form 990 or 990-EZ) 2013

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)		(a) 2009	(b) 2010	(c) 2011	(d) 2012	(e) 2013	(f) Total
1	Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .	155,994	194,431	199,232	187,170	259,631	996,458
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......	3,433	22,184	36,300	28,899	224	91,040
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.	159,427	216,615	235,532	216,069	259,855	1,087,498
7a	Amounts included on lines 1, 2, and 3 received from disqualified persons...	98,500	149,000	102,000	45,000	122,800	517,300
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..	98,500	149,000	102,000	45,000	122,800	517,300
8	Public support (Subtract line 7c from line 6.)						570,198

Section B. Total Support

Calendar year (or fiscal year beginning in)		(a) 2009	(b) 2010	(c) 2011	(d) 2012	(e) 2013	(f) Total
9	Amounts from line 6...	159,427	216,615	235,532	216,069	259,855	1,087,498
10a	Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..				125	14	139
b	Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.
c	Add lines 10a and 10b.				125	14	139
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.)..	159,427	216,615	235,532	216,194	259,869	1,087,637

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

Public support percentage for 2013 (line 8, column (f) divided by line 13, column (f)) .........

52.430 %

Public support percentage from 2012 Schedule A, Part III, line 15 ...............

47.210 %

Section D. Computation of Investment Income Percentage

Investment income percentage for 2013 (line 10c, column (f) divided by line 13, column (f)) ......

0 %

Investment income percentage from 2012 Schedule A, Part III, line 17 .............

19a

33 1/3% support tests—2013. If the organization did not check the box on line 14, and line 15 is more than 33 1/3%, and line 17 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ........ right arrow

33 1/3% support tests—2012. If the organization did not check a box on line 14 or line 19a, and line 16 is more than 33 1/3% and line 18 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ..... right arrow

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

Schedule A (Form 990 or 990-EZ) 2013

Page 4

Part IV

Supplemental Information. 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) 2013

Additional Data

Software ID:
Software Version:

- TIN:

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

Department of the Treasury
Internal Revenue Service

Schedule of Contributors

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

Information about Schedule B (Form 990, 990-EZ, or 990-PF) and its instructions is at www.irs.gov/form990.

OMB No. 1545-0047

2013

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

501(c)( ) (enter number) organization

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

527 political organization

Form 990-PF

501(c)(3) exempt private foundation

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

501(c)(3) taxable private foundation

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

General Rule

For an organization filing Form 990, 990-EZ, or 990-PF that received, during the year, $5,000 or more (in money or
property) from any one contributor. Complete Parts I and II.

Special Rules

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

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

For a section 501(c)(7), (8), or (10) organization filing Form 990 or 990-EZ that received from any one contributor,
during the year, contributions for use exclusively for religious, charitable, etc., purposes, but these contributions did
not total more than $1,000. If this box is checked, enter here the total contributions that were received during
the year for an exclusively religious, charitable, etc., purpose. Do not complete any of the parts unless the General Rule
applies to this organization because it received nonexclusively religious, charitable, etc., contributions of $5,000 or more
during the year ......................... 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 its Form 990PF, Part I, line 2, 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) (2013)

Schedule B (Form 990, 990-EZ, or 990-PF) (2013)

Page 2

Name of organization BASAL CELL CARCINOMA NEVUS SYNDROME LIFE SUPPORT NETWORK

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, RESTRICTEDRESTRICTED	$RESTRICTED	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2013)

Schedule B (Form 990, 990-EZ, or 990-PF) (2013)

Page 3

Name of organization BASAL CELL CARCINOMA NEVUS SYNDROME LIFE SUPPORT NETWORK

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) (2013)

Schedule B (Form 990, 990-EZ, or 990-PF) (2013)

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

(d) Description of how gift is held

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

(a) No.
from
Part I

(b) Purpose of gift

(d) Description of how gift is held

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

(a) No.
from
Part I

(b) Purpose of gift

(d) Description of how gift is held

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

(a) No.
from
Part I

(b) Purpose of gift

(d) Description of how gift is held

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

Schedule B (Form 990, 990-EZ, or 990-PF) (2013)

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE D
(Form 990)

Department of the Treasury
Internal Revenue Service

Supplemental Financial Statements

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

Attach to Form 990. SchDMd Bullet

See separate instructions. SchDMd Bullet

Information about Schedule D (Form 990) and its instructions is at www.irs.gov/form990.

OMB No. 1545-0047

2013

Open to Public Inspection

Name of the organization

BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK

Employer identification number

34-1915691

Part I

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

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

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

Yes No

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

Yes No

Part II

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

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

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

Protection of natural habitat Preservation of a certified historic structure

Preservation of open space

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


a	Total number of conservation easements .......................	2a
b	Total acreage restricted by conservation easements ..................	2b
c	Number of conservation easements on a certified historic structure included in (a) .....	2c
d	Number of conservation easements included in (c) acquired after 8/17/06, and not on a historic structure listed in the National Register ....................	2d

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

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

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

Yes No

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

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

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

Yes No

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

Part III

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

If the organization elected, as permitted under SFAS 116 (ASC 958), not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIII, the text of the footnote to its financial statements that describes these items.

If the organization elected, as permitted under SFAS 116 (ASC 958), to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items:

(i)

Revenues included in Form 990, Part VIII, line 1 ........................ SchDMd Bullet

(ii)

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

If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the
following amounts required to be reported under SFAS 116 (ASC 958) relating to these items:

Revenues included in Form 990, Part VIII, line 1 .......................... SchDMd Bullet

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

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

Cat. No. 52283D

Schedule D (Form 990) 2013

Page 2

Part III

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

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

Public exhibition

Loan or exchange programs

Scholarly research

Other

Preservation for future generations

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

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

Yes No

Part IV

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

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

Yes No

If "Yes," explain the arrangement in Part XIII and complete the following table:


c	Beginning balance .................................	1c
d	Additions during the year ..............................	1d
e	Distributions during the year .............................	1e
f	Ending balance ...................................	1f

Did the organization include an amount on Form 990, Part X, line 21? .....................

Yes No

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

Part V

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

		(a)Current year	(b)Prior year	b (c)Two years back	(d)Three years back	(e)Four years back
1a	Beginning of year balance ....
b	Contributions ........
c	Net investment earnings, gains, and losses
d	Grants or scholarships .....
e	Other expenditures for facilities and programs ........
f	Administrative expenses ....
g	End of year balance ......

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

Board designated or quasi-endowment SchDMd Bullet

Permanent endowment SchDMd Bullet

Temporarily restricted endowment SchDMd Bullet

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

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

Yes

(i) unrelated organizations ........................

3a(i)

(ii) related organizations ........................

3a(ii)

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

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

Part VI

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

Description of property		(b)Cost or other basis (other)	(c) Accumulated depreciation	(d) Book value
1a	Land .................
b	Buildings ................
c	Leasehold improvements ............
d	Equipment ................	13,578	9,185	4,393
e	Other .................
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).).......				4,393

Schedule D (Form 990) 2013

Page 3

Part VII

InvestmentsOther Securities. Complete if the organization answered 'Yes' to Form 990, Part IV, line 11b. See Form 990, Part X, line 12.

(a) Description of security or category (including name of security)		(b)Book value	(c) Method of valuation: Cost or end-of-year market value
(1)Financial derivatives
(2)Closely-held equity interests
Other








Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)

Part VIII

InvestmentsProgram Related. Complete if the organization answered 'Yes' to Form 990, Part IV, line 11c. See Form 990, Part X, line 13.

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









Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)

Part IX

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

(a) Description				(b) Book value









Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........

Part X

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

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









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

Schedule D (Form 990) 2013

Page 4

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

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

Part XIII

Supplemental Information

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

Return Reference	Explanation

Schedule D (Form 990) 2013

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.
MediumBullet

Attach to Form 990 or 990-EZ.
MediumBullet

Information about Schedule O (Form 990 or 990-EZ) and its instructions is at
www.irs.gov/form990.

OMB No. 1545-0047

2013

Open to Public
Inspection

Name of the organization

BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK

Employer identification number

34-1915691

Return Reference	Explanation
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.
FORM 990, PAGE 2, PART III, LINE 4A	"AMERICAN COLLEGE OF ORAL & MAXILLOFACIAL SURGEONS (ACOMS); ADVOCACY BOOTH; CONTINUING ED. "AMERICAN SOCIETY MOHS SURGEONS (ASMS); ADVOCACY BOOTH "AAD & AADA 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 HOSTED A WELL-RECEIVED, ENTHUSIASTICALLY ATTENDED, ANNUAL REGIONAL MEETING IN FORT WORTH, TX IN 2013, WITH GRANT SUPPORT FROM GENENTECH. 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 HOW TO MANAGE AND NAVIGATE THIS COMPLEX ORPHAN CONDITION. THROUGH ATTENDANCE AT THE ABOVE MENTIONED REGIONAL MEMBER/PROFESSIONAL MEETINGS, WE HAD DIRECT CONTACT WITH OVER 760 DISTINCT INDIVIDUALS; OVER 14,800 RANDOM ATTENDEES. 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. HUNDREDS OF PERSONS WITH ADVANCED AND METASTATIC BCCS ARE NOW BENEFITTING FROM NEWLY FDA APPROVED HEDGEHOG INHIBITOR DRUGS BOTH THROUGH CLINICAL TRIALS AND PRESCRIPTION USE. WE HAVE THREE NEW RESEARCH INITIATIVES ON THE HORIZON FOR 2014 INCLUDING: ILLUMINATING NOVEL TARGETS FOR BCC AND SCC CANCER THERAPY, DR. ADDY ALT-HOLLAND, TUFTS UNIVERSITY; BCCNS CLINICAL CONSORTIA & PATIENT REGISTRY, DR. JOYCE TENG, STANFORD UNIVERSITY & DR. AMY PALLER, NORTHWESTERN UNIVERSITY; A RESEARCH STUDY FOR THE APPLICATION OF COMPLEX ADAPTIVE SYSTEMS RESEARCH METHODOLOGY TO BASAL CELL NEVUS SYNDROME, DR. JAMES SOLOMON, AMERIDERM RESEARCH & THE UNIVERSITY OF CENTRAL FLORIDA. POST CONFERENCE AND REGIONAL MEETING EVALUATIONS WERE COMPLETED BY 93% OF ATTENDEES AND OFFERED INSIGHT FOR FUTURE PROGRAMMING AND NEEDS ASSESSMENT. SATISFACTION WAS 93 PLUS IN 95 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 RECEIVED 8,309 UNIQUE VISITORS AND 12,984 VISITS ANNUALLY WITH 36,087 PAGE VIEWS, AN AVERAGE OF 22% HIGHER THAN 2012. 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 AS A CONSUMER REVIEWER FOR GRANT APPLICATIONS; COALITION OF SKIN DISEASES, (CURRENTLY SERVING AS PRESIDENT OF CSD). ADMINISTRATOR, SHEILA LAROSA, BUILDS CONSTITUENT RELATIONS, MANAGES DAY-TO -DAY OPERATIONS, AND COORDINATES ALL COMMUNICATIONS, SCHEDULES APPOINTMENTS, TRIAGES MEMBER NEEDS FOR SERVICES AND COORDINATES. 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 THE QUARTERLY ADVOCATE NEWSLETTER WHICH IS DISTRIBUTED 4 TIMES/YEAR BOTH ELECTRONICALLY AND HARD COPY TO 1879 FAMILIES, CAREGIVERS AND HEALTH CARE PROFESSIONALS WHO TURN TO US FOR SUPPORT AND ASSISTANCE; 3.AUGMENT DIRECT COMMUNICATION AND MEMBER OUTREACH INCREASING OUR FAMILY MEMBERSHIP BY 44 NEW FAMILIES THIS YEAR (EACH WITH MULTIPLE AFFECTED FAMILY MEMBERS); 4.FOSTER RESPONSIBILITY THROUGH UNDERSTANDING OF TREATMENT OPTIONS; 5.HOST AN EDUCATIONAL RETREAT AND MEMBER MEETING IN FORT WORTH, TX 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, SUPPLEMENTING THEIR AWARENESS OF THIS CONDITION, MANIFESTATIONS, TREATMENT OPTIONS AND CLINICAL TRIAL OPPORTUNITIES. THESE EXPERIENCES HAVE PROVIDED US WITH INVALUABLE CONTACTS AND RESOURCES. 7.DISTRIBUTED 24 BAND-AIDE BUDDIES (STUFFED TOYS TO COMFORT CHILDREN) TO ACCOMPANY NEWLY DIAGNOSED CHILDREN AFFECTED BY THE CONDITION TO APPOINTMENTS, SURGERIES, & PROCEDURES. IT IS ABUNDANTLY APPARENT THAT OUR PROGRAMS AND SERVICES ARE EFFECTIVE EFFORTS IN ORDER TO EDUCATE AFFECTED INDIVIDUALS, FAMILIES, CAREGIVERS AND MEDICAL PROFESSIONALS AND PROVIDE A VITAL LINK TO ACCESSING: CURRENT TREATMENT OPTIONS; EMOTIONAL SUPPORT TO BETTER MANAGE THE BURDEN OF CHRONIC ILLNESS; AND INFORMATION ON CURRENTLY AVAILABLE CLINICAL TRIAL OPPORTUNITIES. WE WILL CONTINUE TO ENGAGE THESE INITIATIVES THROUGHOUT 2014.
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 2013 COMPENSATION PAID TO THE EXECUTIVE DIRECTOR WAS 48,000. NONTAXABLE FRINGE BENEFITS PROVIDED AMOUNTED TO 13,805.
FORM 990, PAGE 6, PART VI, LINE 2	ALAN ROTH KATHLYN ROTH TRUSTEE TRUSTEE SPOUSE
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.
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.
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.
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.

Cat. No. 51056K

Schedule O (Form 990 or 990-EZ) 2013

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