Form990
Click to see attachment
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)
MediumBullet Do not enter social security numbers on this form as it may be made public.
MediumBullet Information about Form 990 and its instructions is at www.IRS.gov/form990.
OMB No. 1545-0047
2014
Open to Public Inspection
A For the 2014 calendar year, or tax year beginning 01-01-2014 , and ending 12-31-2014
BCheck if applicable:
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 $ 171,421
F Name and address of principal officer:
KRISTI SCHMITT BURR
P O BOX 321
BURTON,OH44021
I
Tax-exempt status: (   ) LeftBullet (insert no.) or
J
Website:MediumBullet
WWW.BCCNS.ORG
H(a)
Is this a group return for
subordinates?
H(b)
Are all subordinates
included?
If "No," attach a list. (see instructions)
H(c)
Group exemption number MediumBullet  
K Form of organization:
 
L Year of formation: 2000
M State of legal domicile: OH
Part I
Summary
Activities & Governance 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 MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a) ........ 3 7
4 Number of independent voting members of the governing body (Part VI, line 1b) ..... 4 6
5 Total number of individuals employed in calendar year 2014 (Part V, line 2a) ...... 5 0
6 Total number of volunteers (estimate if necessary) ............. 6 65
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  
Revenues Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 259,631 168,035
9 Program service revenue (Part VIII, line 2g) .........   0
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 14 14
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) 224 0
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)................... 259,869 168,049
Expenses; 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)   35,312
16a Professional fundraising fees (Part IX, column (A), line 11e).....   0
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet6,595    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e).... 204,989 155,669
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 204,989 190,981
19 Revenue less expenses. Subtract line 18 from line 12....... 54,880 -22,932
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 83,263 33,137
21 Total liabilities (Part X, line 26)............. 38,372 11,178
22 Net assets or fund balances. Subtract line 21 from line 20..... 44,891 21,959
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
JumboBullet
Signature of officer Date
JumboBullet
Type or print name and title
Paid Preparer Use Only
Print/Type preparer's name
Preparer's signature
Date
PTIN
Firm's name MediumBullet
Firm's EIN MediumBullet
Firm's address MediumBullet



Phone no.
May the IRS discuss this return with the preparer shown above? (see instructions) ..........
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y Form 990 (2014)
Form 990 (2014)
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 ..............
1
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.
2
Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ? ......................
If "Yes," describe these new services on Schedule O.
3
Did the organization cease conducting, or make significant changes in how it conducts, any program services? ............................
If "Yes," describe these changes on Schedule O.
4
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 $ 171,407 including grants of $   ) (Revenue $   )
THE NETWORK ATTENDED THE FOLLOWING MEDICAL PROFESSIONAL MEETINGS IN 2014 TO EDUCATE: HEALTHCARE PROVIDERS; AFFECTED FAMILIES; AND THE PUBLIC SECTOR; 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 AND CONTINUING EDUCATION "PARTICIPATED WITH THE PEDIATRIC DERMATOLOGY RESEARCH ALLIANCE (PEDRA). MET WITH RESEARCHERS WHO ARE FACILITATING THE BCCNS REGISTRY. "2014 AAO-HNSF ANNUAL MEETING & OTO EXPO; ADVOCACY BOOTH; PUBLIC EDUCATION "AMERICAN SOCIETY MOHS SURGEONS (ASMS); CONTINUING EDUCATION "AAD & AADA RESEARCH AGENDA CONSENSUS CONFERENCE ""ONE VOICE AGAINST CANCER" DEVELOPMENT AND ADVOCACY 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 TWO WELL-RECEIVED, ENTHUSIASTICALLY ATTENDED, REGIONAL MEETINGS IN ORLANDO, FL AND BURTON, OH IN 2014, 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 1,200 DISTINCT INDIVIDUALS; OVER 13,500 RANDOM ATTENDEES. THE EDUCATIONAL PROGRAMMING REACHES THOUSANDS MORE THROUGH DISTRIBUTION OF DISEASE SPECIFIC MATERIALS, CLINICAL TRIAL PARTICIPATION, MEDICAL PROFESSIONAL CONFERENCES, ONLINE SOCIAL MEDIA AVENUES (FACEBOOK, TWITTER, LINKEDIN) AND DIRECT CONTACT VIA TELEPHONE, E- MAIL, WEBSITE AND IN- PERSON INTERACTION. WE BEGAN THE PROCESS OF UPGRADING OUR WEBSITE TO ENSURE THAT IT IS MORE USER AND MOBILE FRIENDLY. 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 INITIATED THREE NEW RESEARCH PROGRAMS IN 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. THE NETWORK CONDUCTED THREE NATION-WIDE SURVEYS FOR PEDIATRIC BCCNS; ADULTS WITH BCCNS; AND MELANOMA AND INDOOR TANNING. POST CONFERENCE AND REGIONAL MEETING EVALUATIONS WERE COMPLETED BY 87% OF ATTENDEES AND OFFERED INSIGHT FOR FUTURE PROGRAMMING AND NEEDS ASSESSMENT. SATISFACTION WAS 90 PLUS IN 85 PERCENTILE OF ATTENDEES FOR ALL VENUES. THE NETWORK DEVELOPED, PRODUCED AND DISTRIBUTED COLLATERAL MATERIALS, NEWSLETTERS, EDUCATIONAL ARTICLES, INFORMATION ON CLINICAL TRIALS, ONLINE FORUM AND SOCIAL MEDIA AVENUES WHICH ARE ALL AVAILABLE ON THE NETWORK'S ORGANIZATIONAL WEBSITE. THE WEBSITE RECEIVED 9,253 UNIQUE VISITORS AND 13,610 VISITS WITH 46,439 PAGE VIEWS. 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). STAFF, SUBCONTRACTORS AND VOLUNTEERS CONTINUE TO BUILD CONSTITUENT RELATIONS, MANAGE DAY-TO-DAY OPERATIONS, AND COORDINATE ALL COMMUNICATIONS, SCHEDULE APPOINTMENTS, AND TRIAGE MEMBER NEEDS FOR SERVICES. 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 EXPANDED 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 ORLANDO, FL AND BURTON, OH IN 2014, 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 31 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 2015.
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 expensesMediumBullet171,407
Form 990 (2014)
Form 990 (2014)
Page 3
Part IV
Checklist of Required Schedules
Yes
No
1
Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule AClick to see attachment........................
1
Yes
 
2
Is the organization required to complete Schedule B, Schedule of Contributors (see instructions)? Click to see attachment...
2
Yes
 
3
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..........
3
 
No
4
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........
4
 
No
5
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............................
5
 
No
6
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 IClick to see attachment........................
6
 
No
7
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 IIClick to see attachment...
7
 
No
8
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....................
8
 
No
9
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 IVClick to see attachment..............
9
 
No
10
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 VClick to see attachment......
10
 
No
11
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.
a
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
 
b
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 VIIClick to see attachment.......
11b
 
No
c
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 VIIIClick to see attachment.......
11c
 
No
d
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 IXClick to see attachment............
11d
 
No
e
Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part XClick to see attachment
11e
 
No
f
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 XClick to see attachment.........................
11f
 
No
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
 
No
b
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
 
No
13
Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E....
13
 
No
14a
Did the organization maintain an office, employees, or agents outside of the United States?.....
14a
 
No
b
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
 
No
15
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
15
 
No
16
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...
16
 
No
17
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) ....
17
 
No
18
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............
18
 
No
19
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...................
19
 
No
20a
Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H....
20a
 
No
b
If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?
20b
 
 
Form 990 (2014)
Form 990 (2014)
Page 4
Part IV
Checklist of Required Schedules (continued)
21
Did the organization report more than $5,000 of grants or other assistance to any domestic organization or domestic government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II..
21
 
No
22
Did the organization report more than $5,000 of grants or other assistance to or for domestic individuals on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........
22
 
No
23
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.......................
23
 
No
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
 
No
b
Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...
24b
 
 
c
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
 
 
d
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), 501(c)(4), and 501(c)(29) 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
 
No
b
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
 
No
26
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 "Yes," complete Schedule L, Part II................
26
 
No
27
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.........
27
 
No
28
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
A current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L, Part IV ..........................
28a
 
No
b
A family member of a current or former officer, director, trustee, or key employee? If "Yes,"
complete Schedule L, Part IV.....................
28b
 
No
c
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
 
No
29
Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M..
29
 
No
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M.............
30
 
No
31
Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N,
Part I...........................
31
 
No
32
Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II......................
32
 
No
33
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........
33
 
No
34
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........................
34
 
No
35a
Did the organization have a controlled entity within the meaning of section 512(b)(13)?
35a
 
No
b
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
 
 
36
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.............
36
 
No
37
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
37
 
No
38
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. ............
38
Yes
 
Form 990 (2014)
Form 990 (2014)
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
No
1a
Enter the number reported in Box 3 of Form 1096 Enter -0- if not applicable ..
1a
10
b
Enter the number of Forms W-2G included in line 1a. Enter -0- if not applicable .
1b
0
c
Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................
1c
Yes
 
2a
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 ..................
2a
0
b
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)
2b
 
 
3a
Did the organization have unrelated business gross income of $1,000 or more during the year?...
3a
 
No
b
If “Yes,” has it filed a Form 990-T for this year? If “No” to line 3b, provide an explanation in Schedule O...
3b
 
 
4a
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)?..........................
4a
 
No
b
If "Yes," enter the name of the foreign country: MediumBullet
See instructions for filing requirements for FinCEN Form 114, Report of Foreign Bank and Financial Accounts (FBAR).
5a
Was the organization a party to a prohibited tax shelter transaction at any time during the tax year?..
5a
 
No
b
Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?
5b
 
No
c
If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ............
5c
 
 
6a
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?...
6a
 
No
b
If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible?........................
6b
 
 
7
Organizations that may receive deductible contributions under section 170(c).
a
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?....................
7a
 
No
b
If "Yes," did the organization notify the donor of the value of the goods or services provided?.....
7b
 
 
c
Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282?...........................
7c
 
No
d
If "Yes," indicate the number of Forms 8282 filed during the year ....
7d
 
e
Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?............................
7e
 
No
f
Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract?..
7f
 
No
g
If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required?............................
7g
 
 
h
If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C?..........................
7h
 
 
8
Sponsoring organizations maintaining donor advised funds.
Did a donor advised fund maintained by the sponsoring organization have excess business holdings at any time during the year?.........................
8
 
 
9a
Did the sponsoring organization make any taxable distributions under section 4966?...
9a
 
 
b
Did the sponsoring organization make a distribution to a donor, donor advisor, or related person?...
9b
 
 
10
Section 501(c)(7) organizations. Enter:
a
Initiation fees and capital contributions included on Part VIII, line 12 ...
10a
 
b
Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities
10b
 
11
Section 501(c)(12) organizations. Enter:
a
Gross income from members or shareholders .........
11a
 
b
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
 
 
b
If "Yes," enter the amount of tax-exempt interest received or accrued during the year. ....................
12b
 
13
Section 501(c)(29) qualified nonprofit health insurance issuers.
a
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
 
 
b
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
 
c
Enter the amount of reserves on hand ............
13c
 
14a
Did the organization receive any payments for indoor tanning services during the tax year?.....
14a
 
No
b
If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O..
14b
 
 
Form 990 (2014)
Form 990 (2014)
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
No
1a
Enter the number of voting members of the governing body at the end of the tax year .....................
1a
7
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.
b
Enter the number of voting members included in line 1a, above, who are independent ...................
1b
6
2
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? .................
2
Yes
 
3
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? .
3
 
No
4
Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? ...........................
4
 
No
5
Did the organization become aware during the year of a significant diversion of the organization’s assets? .
5
 
No
6
Did the organization have members or stockholders? ................
6
 
No
7a
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? ....................
7a
 
No
b
Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? ...................
7b
 
No
8
Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:
a
The governing body? .........................
8a
Yes
 
b
Each committee with authority to act on behalf of the governing body? ............
8b
Yes
 
9
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.......
9
 
No
Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)
Yes
No
10a
Did the organization have local chapters, branches, or affiliates? ............
10a
 
No
b
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
 
No
b
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
 
b
Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ..........................
12b
Yes
 
c
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
 
13
Did the organization have a written whistleblower policy? ...............
13
 
No
14
Did the organization have a written document retention and destruction policy? .........
14
Yes
 
15
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?
a
The organization’s CEO, Executive Director, or top management official ...........
15a
Yes
 
b
Other officers or key employees of the organization ................
15b
 
No
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
 
No
b
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
17
List the States with which a copy of this Form 990 is required to be filedMediumBullet
OH , NY , CA , TN , KS
18
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.
19
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.
20
State the name, address, and telephone number of the person who possesses the organization's books and records:
MediumBulletKRISTI SCHMITT BURR
14525 NORTH CHESHIRE STREET
BURTON,OH44021 (440) 834-0011
Form 990 (2014)
Form 990 (2014)
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.

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

RoundBullet 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.

RoundBullet 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
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(1) KRISTI SCHMITT BURR........................................................................
EXECUTIVE DI
 40.00
.......................   		X   X       12,339 0 0
(2) WILLIAM GINN........................................................................
PRESIDENT
 10.00
.......................   		X   X       0 0 0
(3) KATHLYN ROTH........................................................................
SECRETARY
 2.00
.......................   		X   X       0 0 0
(4) MICHAEL RAINEN........................................................................
TRUSTEE
 2.00
.......................   		X           0 0 0
(5) BRYANT BRADLEY........................................................................
TRUSTEE
 2.00
.......................   		X           0 0 0
(6) JULIE BRENEISER........................................................................
TRUSTEE
 2.00
.......................   		X           0 0 0
(7) ALAN ROTH........................................................................
TRUSTEE
 2.00
.......................   		X           0 0 0




















Form 990 (2014)
Form 990 (2014)
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
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;


























1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)............MediumBullet 12,339    
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organizationMediumBullet  
Yes
No
3
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 ..............
3
 
No
4
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...........................
4
 
No
5
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 ........
5
 
No
Section B. Independent Contractors
1
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 $100,000 of compensation from the organization MediumBullet  
Form 990 (2014)
Form 990 (2014)
Page 9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this Part VIII .............
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512-514
Contributions, Gifts, GrantAmt and OtherAmt Similar Amounts 1a Federated campaigns..1a  
b Membership dues....1b  
c Fundraising events....1c 1,828
d Related organizations...1d  
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and
similar amounts not included above1f 		166,207
g Noncash contributions included in lines
1a-1f:$ 		 
h Total. Add lines 1a-1f.......MediumBullet 168,035
Program Service RevenueAmt Business Code
2a
b
c
d
e
f All other program service revenue .        
g Total. Add lines 2a–2f........MediumBullet  
OtherAmt RevenueAmt 3 Investment income (including dividends, interest, and other similar amounts).......MediumBullet 14     14
4 Income from investment of tax-exempt bond proceeds..MediumBullet        
5 Royalties...........MediumBullet        
(i) Real (ii) Personal
6a Gross rents    
b Less: rental expenses    
c Rental income or (loss)    
d Net rental income or (loss).......MediumBullet        
(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)..........MediumBullet        
8a Gross income from fundraising events (not including
$ 1,828
of contributions reported on line 1c). See Part IV, line 18 ..
a 3,372
b Less: direct expenses ...b 3,372
c Net income or (loss) from fundraising events..MediumBullet      
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...MediumBullet        
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..MediumBullet        
Miscellaneous Revenue Business Code
11a            
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ...... MediumBullet  
12 Total revenue. See Instructions......MediumBullet 168,049     14
Form 990 (2014)
Form 990 (2014)
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 domestic organizations and domestic governments. See Part IV, line 21 ....    
2 Grants and other assistance to domestic individuals. See Part IV, line 22 ....    
3 Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See Part IV, lines 15 and 16 ............    
4 Benefits paid to or for members ....    
5 Compensation of current officers, directors, trustees, and key employees .... 12,339 10,858 1,234 247
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 .... 22,973 20,217 2,297 459
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 ......... 6,200 6,200    
c Accounting ........... 1,600   1,600  
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) ....        
12 Advertising and promotion .... 5,625 5,625    
13 Office expenses ....... 19,418 19,219 33 166
14 Information technology ...... 1,066 1,066    
15 Royalties ..        
16 Occupancy ........... 12,336 11,162 1,174  
17 Travel ............ 1,575 1,575    
18 Payments of travel or entertainment expenses for any federal, state, or local public officials ......        
19 Conferences, conventions, and meetings .... 36,480 36,480    
20 Interest ...........        
21 Payments to affiliates .......        
22 Depreciation, depletion, and amortization ..... 2,686 2,283 403  
23 Insurance .............. 2,037 1,731 306  
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 CONTRACTED SERVICES 55,354 48,712 5,535 1,107
b FUNDRAISING EXPENSES 4,616     4,616
c CAMP FUND 3,000 3,000    
d RESEARCH AND TRIALS 791 791    
e All other expenses 2,885 2,488 397  
25 Total functional expenses. Add lines 1 through 24e 190,981 171,407 12,979 6,595
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 MediumBullet if following SOP 98-2 (ASC 958-720).        
Form 990 (2014)
Form 990 (2014)
Page 11
Part X Balance Sheet Check if Schedule O contains a response or note to any line in this Part X ..............
(A)
Beginning of year 		(B)
End of year
Assets 1 Cash–non-interest-bearing ............. 387 1 302
2 Savings and temporary cash investments ......... 76,430 2 6,028
3 Pledges and grants receivable, net ........... 387 3 24,760
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 11,871 4,393 10c 1,707
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 ...............   14  
15 Other assets. See Part IV, line 11 ........... 1,666 15 340
16 Total assets. Add lines 1 through 15 (must equal line 34)...... 83,263 16 33,137
Liabilities 17 Accounts payable and accrued expenses ......... 38,372 17 11,178
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......... 38,372 26 11,178
Net Assets or Fund Balance Organizations that follow SFAS 117 (ASC 958), check here MediumBullet and complete lines 27 through 29, and lines 33 and 34.
27 Unrestricted net assets .............. 44,891 27 21,959
28 Temporarily restricted net assets ...........   28  
29 Permanently restricted net assets ...........   29  
Organizations that do not follow SFAS 117 (ASC 958), check here MediumBullet 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 ........... 44,891 33 21,959
34 Total liabilities and net assets/fund balances ........ 83,263 34 33,137
Form 990 (2014)
Form 990 (2014)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response or note to any line in this Part XI ..............
1
Total revenue (must equal Part VIII, column (A), line 12) ............
1
168,049
2
Total expenses (must equal Part IX, column (A), line 25) ............
2
190,981
3
Revenue less expenses. Subtract line 2 from line 1 ..............
3
-22,932
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..
4
44,891
5
Net unrealized gains (losses) on investments ...............
5
 
6
Donated services and use of facilities .................
6
 
7
Investment expenses .....................
7
 
8
Prior period adjustments .....................
8
 
9
Other changes in net assets or fund balances (explain in Schedule O) ........
9
 
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 33, column (B))
10
21,959
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response or note to any line in this Part XII .............
Yes
No
1
Accounting method used to prepare the Form 990:  
If the organization changed its method of accounting from a prior year or checked "Other," explain in
Schedule O.
2a
Were the organization’s financial statements compiled or reviewed by an independent accountant?
2a
 
No
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:
b
Were the organization’s financial statements audited by an independent accountant?
2b
 
No
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:
c
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?
2c
 
 
If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.
3a
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? .................
3a
 
No
b
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.
3b
 
 
Form 990 (2014)
Form 990 (2014)
Page 13
Form 990, Special Condition Description:
Special Condition Description
Form 990 (2014)
Form 990 (2014)
Page 14
Additional Data


Software ID:  
Software Version:  
SCHEDULE A
(Form 990 or 990EZ)

Department of the Treasury
Internal Revenue Service
Public Charity Status and Public Support
Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
right arrow Attach to Form 990 or Form 990-EZ.
right arrow Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2014
Open to Public
Inspection
Name of the organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK
Employer identification number

34-1915691
Part I
Reason for Public Charity Status (All organizations must complete this part.) See instructions.
The organization is not a private foundation because it is: (For lines 1 through 11, check only one box.)
1
2
3
4
5
section 170(b)(1)(A)(iv). (Complete Part II.)
6
7
8
9
receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 331/3% of
its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses
acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)
10
11
a
b
c
d
e
f
Enter the number of supported organizations .............................  
g
Provide the following information about the supported organization(s).
(i)Name of supported organization (ii) EIN (iii) Type of organization (described on lines 1- 9 above or IRC section (see instructions)) (iv) Is the organization listed in your governing document? (v) Amount of monetary support (see instructions) (vi) Amount of other support (see instructions)
Yes No
Total    

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990EZ.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2014
Schedule A (Form 990 or 990-EZ) 2014
Page 2
Part II
Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 of Part I or if the organization failed to qualify under Part III. If the organization fails to qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") ....            
2 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.......            
3 The value of services or facilities furnished by a governmental unit to the organization without charge..            
4 Total. Add lines 1 through 3            
5 The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f)..  
6 Public support. Subtract line 5 from line 4.  
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (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 VI.)..            
11 Total support Add lines 7 through 10.  
12
12
 
13
First five years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here........................................right arrow
Section C. Computation of Public Support Percentage
14
14
 
15
15
 
16a
b
17a
b
18
Private foundation. If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions ..................................................... right arrow
Schedule A (Form 990 or 990-EZ) 2014
Schedule A (Form 990 or 990-EZ) 2014
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 9 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . 194,431 199,232 187,170 259,631 168,035 1,008,499
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...... 22,184 36,300 28,899 224 3,372 90,979
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. 216,615 235,532 216,069 259,855 171,407 1,099,478
7a Amounts included on lines 1, 2, and 3 received from disqualified persons... 149,000 102,000 45,000 122,800   418,800
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.. 149,000 102,000 45,000 122,800   418,800
8 Public support (Subtract line 7c from line 6.) 680,678
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) 2014 (f) Total
9 Amounts from line 6... 216,615 235,532 216,069 259,855 171,407 1,099,478
10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..     125 14 14 153
b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.            
c Add lines 10a and 10b.     125 14 14 153
11 Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on.            
12 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) ..            
13 Total support. (Add lines 9, 10c, 11, and 12.).. 216,615 235,532 216,194 259,869 171,421 1,099,631
14
Section C. Computation of Public Support Percentage
15
15
61.900 %
16
16
52.430 %
Section D. Computation of Investment Income Percentage
17
17
0 %
18
18
0 %
19a
b
20
Schedule A (Form 990 or 990-EZ) 2014
Schedule A (Form 990 or 990-EZ) 2014
Page 4
Part IV
Supporting Organizations
(Complete only if you checked a box on line 11 of Part I. If you checked 11a of Part I, complete Sections A and B. If you checked 11b of Part I, complete Sections A and C. If you checked 11c of Part I, complete Sections A, D, and E. If you checked 11d of Part I, complete Sections A and D, and complete Part V.)
Section A. All Supporting Organizations
Yes
No
1
Are all of the organization’s supported organizations listed by name in the organization’s governing documents?
If "No," describe in Part VI how the supported organizations are designated. If designated by class or purpose,
describe the designation. If historic and continuing relationship, explain.
1
 
 
2
Did the organization have any supported organization that does not have an IRS determination of status under section 509(a)(1) or (2)? If "Yes," explain in Part VI how the organization determined that the supported organization was described in section 509(a)(1) or (2).
2
 
 
3a
Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer (b) and (c) below.
3a
 
 
b
Did the organization confirm that each supported organization qualified under section 501(c)(4), (5), or (6) and satisfied the public support tests under section 509(a)(2)? If "Yes," describe in Part VI when and how the organization made the determination.
3b
 
 
c
Did the organization ensure that all support to such organizations was used exclusively for section 170(c)(2)(B) purposes? If "Yes," explain in Part VI what controls the organization put in place to ensure such use.
3c
 
 
4a
Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked 11a or 11b in Part I, answer (b) and (c) below.
4a
 
 
b
Did the organization have ultimate control and discretion in deciding whether to make grants to the foreign supported organization? If “Yes,” describe in Part VI how the organization had such control and discretion despite being controlled or supervised by or in connection with its supported organizations....
4b
 
 
c
Did the organization support any foreign supported organization that does not have an IRS determination under sections 501(c)(3) and 509(a)(1) or (2)? If “Yes,” explain in Part VI what controls the organization used to ensure that all support to the foreign supported organization was used exclusively for section 170(c)(2)(B) purposes.
4c
 
 
5a
Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer (b) and (c) below (if applicable). Also, provide detail in Part VI, including (i) the names and EIN numbers of the supported organizations added, substituted, or removed, (ii) the reasons for each such action, (iii) the authority under the organization's organizing document authorizing such action, and (iv) how the action was accomplished (such as by amendment to the organizing document).
5a
 
 
b
Type I or Type II only. Was any added or substituted supported organization part of a class already designated in the organization's organizing document?
5b
 
 
c
Substitutions only. Was the substitution the result of an event beyond the organization's control?
5c
 
 
6
Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (a) its supported organizations; (b) individuals that are part of the charitable class benefited by one or more of its supported organizations; or (c) other supporting organizations that also support or benefit one or more of the filing organization’s supported organizations? If “Yes,” provide detail in Part VI.
6
 
 
7
Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in IRC 4958(c)(3)(C)), a family member of a substantial contributor, or a 35-percent controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990) .
7
 
 
8
Did the organization make a loan to a disqualified person (as defined in section 4958) not described in line 7? If “Yes,” complete Part II of Schedule L (Form 990).
8
 
 
9a
Was the organization controlled directly or indirectly at any time during the tax year by one or more disqualified persons as defined in section 4946 (other than foundation managers and organizations described in section 509(a)(1) or (2))? If “Yes,” provide detail in Part VI.
9a
 
 
b
Did one or more disqualified persons (as defined in line 9(a)) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.
9b
 
 
c
Did a disqualified person (as defined in line 9(a)) have an ownership interest in, or derive any personal benefit from, assets in which the supporting organization also had an interest? If “Yes,” provide detail in Part VI.
9c
 
 
10a
Was the organization subject to the excess business holdings rules of IRC 4943 because of IRC 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer b below.
10a
 
 
b
Did the organization have any excess business holdings in the tax year? (Use Schedule C, Form 4720, to determine whether the organization had excess business holdings).
10b
 
 
11
Has the organization accepted a gift or contribution from any of the following persons?
a
A person who directly or indirectly controls, either alone or together with persons described in (b) and (c) below, the governing body of a supported organization?
11a
 
 
b
A family member of a person described in (a) above?
11b
 
 
c
A 35% controlled entity of a person described in (a) or (b) above? If “Yes” to a, b, or c, provide detail in Part VI.
11c
 
 
Schedule A (Form 990 or 990-EZ) 2014
Schedule A (Form 990 or 990-EZ) 2014
Page 5
Part IV
Supporting Organizations (continued)

Section B. Type I Supporting Organizations
Yes
No
1
Did the directors, trustees, or membership of one or more supported organizations have the power to regularly appoint or elect at least a majority of the organization’s directors or trustees at all times during the tax year? If “No,” describe in Part VI how the supported organization(s) effectively operated, supervised, or controlled the organization’s activities. If the organization had more than one supported organization, describe how the powers to appoint and/or remove directors or trustees were allocated among the supported organizations and what conditions or restrictions, if any, applied to such powers during the tax year.
1
 
 
2
Did the organization operate for the benefit of any supported organization other than the supported organization(s) that operated, supervised, or controlled the supporting organization? If “Yes,” explain in Part VI how providing such benefit carried out the purposes of the supported organization(s) that operated, supervised or controlled the supporting organization.
2
 
 
Section C. Type II Supporting Organizations
Yes
No
1
Were a majority of the organization’s directors or trustees during the tax year also a majority of the directors or trustees of each of the organization’s supported organization(s)? If “No,” describe in Part VI how control or management of the supporting organization was vested in the same persons that controlled or managed the supported organization(s).
1
 
 
Section D. All Type III Supporting Organizations
Yes
No
1
Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (1) a written notice describing the type and amount of support provided during the prior tax year, (2) a copy of the Form 990 that was most recently filed as of the date of notification, and (3) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?
1
 
 
2
Were any of the organization’s officers, directors, or trustees either (i) appointed or elected by the supported organization(s) or (ii) serving on the governing body of a supported organization? If "No," explain in Part VI how the organization maintained a close and continuous working relationship with the supported organization(s).
2
 
 
3
By reason of the relationship described in (2), did the organization’s supported organizations have a significant voice in the organization’s investment policies and in directing the use of the organization’s income or assets at all times during the tax year? If "Yes," describe in Part VI the role the organization’s supported organizations played in this regard.
3
 
 
Section E. Type III Functionally-Integrated Supporting Organizations
1
Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):
a
b
c
2
Activities Test. Answer (a) and (b) below.
Yes
No
a
Did substantially all of the organization’s activities during the tax year directly further the exempt purposes of the supported organization(s) to which the organization was responsive? If "Yes," then in Part VI identify those supported organizations and explain how these activities directly furthered their exempt purposes, how the organization was responsive to those supported organizations, and how the organization determined that these activities constituted substantially all of its activities.
2a
 
 
b
Did the activities described in (a) constitute activities that, but for the organization’s involvement, one or more of the organization’s supported organization(s) would have been engaged in? If "Yes," explain in Part VI the reasons for the organization’s position that its supported organization(s) would have engaged in these activities but for the organization’s involvement.
2b
 
 
3
Parent of Supported Organizations. Answer (a) and (b) below.
a
Did the organization have the power to regularly appoint or elect a majority of the officers, directors, or trustees of each of the supported organizations? Provide details in Part VI.
3a
 
 
b
Did the organization exercise a substantial degree of direction over the policies, programs and activities of each of its supported organizations? If "Yes," describe in Part VI the role played by the organization in this regard.
3b
 
 
Schedule A (Form 990 or 990-EZ) 2014
Schedule A (Form 990 or 990-EZ) 2014
Page 6
Part V – Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations

1.   Check here if the organization satisfied the Integral Part Test as a qualifying trust on Nov. 20, 1970. See instructions. All other Type III non-functionally integrated supporting organizations must complete Sections A through E.
Section A - Adjusted Net Income (A) Prior Year (B) Current Year
(optional)
1 Net short-term capital gain 1    
2 Recoveries of prior-year distributions 2    
3 Other gross income (see instructions) 3    
4 Add lines 1 through 3 4    
5 Depreciation and depletion 5    
6 Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) 6    
7 Other expenses (see instructions) 7    
8 Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) 8    

Section B - Minimum Asset Amount (A) Prior Year (B) Current Year
(optional)
1 Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): 1
a Average monthly value of securities 1a    
b Average monthly cash balances 1b    
c Fair market value of other non-exempt-use assets 1c    
d Total (add lines 1a, 1b, and 1c) 1d    
e Discount claimed for blockage or other factors (explain in detail in Part VI):  
2 Acquisition indebtedness applicable to non-exempt use assets 2    
3 Subtract line 2 from line 1d 3    
4 Cash deemed held for exempt use. Enter 1-1/2% of line 3 (for greater amount, see instructions). 4    
5 Net value of non-exempt-use assets (subtract line 4 from line 3) 5    
6 Multiply line 5 by .035 6    
7 Recoveries of prior-year distributions 7    
8 Minimum Asset Amount (add line 7 to line 6) 8    

Section C - Distributable Amount Current Year
1 Adjusted net income for prior year (from Section A, line 8, Column A) 1  
2 Enter 85% of line 1 2  
3 Minimum asset amount for prior year (from Section B, line 8, Column A) 3  
4 Enter greater of line 2 or line 3 4  
5 Income tax imposed in prior year 5  
6 Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) 6  
7   Check here if the current year is the organization's first as a non-functionally-integrated Type III supporting organization (see instructions)
Schedule A (Form 990 or 990-EZ) 2014
Schedule A (Form 990 or 990-EZ) 2014
Page 7
Section D - Distributions Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes  
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in
excess of income from activity		  
3 Administrative expenses paid to accomplish exempt purposes of supported organizations  
4 Amounts paid to acquire exempt-use assets  
5 Qualified set-aside amounts (prior IRS approval required)  
6 Other distributions (describe in Part VI). See instructions  
7Total annual distributions. Add lines 1 through 6.  
8 Distributions to attentive supported organizations to which the organization is responsive (provide
details in Part VI). See instructions		  
9 Distributable amount for 2014 from Section C, line 6  
10 Line 8 amount divided by Line 9 amount  

Section E - Distribution Allocations (see instructions) (i)
Excess Distributions 		(ii)
Underdistributions
Pre-2014 		(iii)
Distributable
Amount for 2014
1 Distributable amount for 2014 from Section C, line
6 		 
2 Underdistributions, if any, for years prior to 2014
(reasonable cause required--see instructions)		  
3 Excess distributions carryover, if any, to 2014:
a From 2009.......X
b From 2010.......X
c From 2011.......X
d From 2012.......X
e From 2013.......  
fTotal of lines 3a through e  
g Applied to underdistributions of prior years  
h Applied to 2014 distributable amount  
i Carryover from 2009 not applied (see
instructions)
j Remainder. Subtract lines 3g, 3h, and 3i from 3f.  
4Distributions for 2014 from Section D, line 7:
$  
a Applied to underdistributions of prior years  
b Applied to 2014 distributable amount  
c Remainder. Subtract lines 4a and 4b from 4.  
5 Remaining underdistributions for years prior to
2014, if any. Subtract lines 3g and 4a from line 2
(if amount greater than zero, see instructions)		  
6 Remaining underdistributions for 2014. Subtract
lines 3h and 4b from line 1 (if amount greater than
zero, see instructions)		  
7 Excess distributions carryover to 2015. Add lines
3j and 4c.		  
8 Breakdown of line 7:
a From 2010.......X
b From 2011.......X
c From 2012.......X
d From 2013.......  
e From 2014.......  
Schedule A (Form 990 or 990-EZ) (2014)
Schedule A (Form 990 or 990-EZ) 2014
Page 8
Part VI
Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; Part III, line 12; Part IV, Section A, lines 1, 2, 3b, 3c, 4b, 4c, 5a, 6, 9a, 9b, 9c, 11a, 11b, and 11c; Part IV, Section B, lines 1 and 2; Part IV, Section C, line 1; Part IV, Section D, lines 2 and 3; Part IV, Section E, lines 1c, 2a, 2b, 3a and 3b; Part V, line 1; Part V, Section B, line 1e; Part V Section D, lines 5, 6, and 8; and Part V, Section E, lines 2, 5, and 6. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Return Reference Explanation
Schedule A (Form 990 or 990-EZ) 2014

Additional Data


Software ID:  
Software Version:  
Schedule B
(Form 990, 990-EZ,
or 990-PF)
Department of the Treasury
Internal Revenue Service
Schedule of Contributors
Arrow Bullet Attach to Form 990, 990-EZ, or 990-PF.
Arrow Bullet Information about Schedule B (Form 990, 990-EZ, or 990-PF) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2014
Name of the organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK
Employer identification number

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





Form 990-PF




Check if your organization is covered by the General Rule or a Special Rule.  
Note. Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.
General Rule
Special Rules
......... Arrow Bullet $  
Caution. An organization that is not covered by the General Rule and/or the Special Rules does not file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its
Form 990-EZ or on 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) (2014)

Schedule B (Form 990, 990-EZ, or 990-PF) (2014)
Page 2
Name of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK 		Employer identification number

34-1915691
Part I
Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
RESTRICTED
 
 

   
 
 
  ,    

$RESTRICTED


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

   
 
 

$  


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

   
 
 

$  


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

   
 
 

$  


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

   
 
 

$  


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

   
 
 

$  


(Complete Part II for noncash contributions.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2014)

Schedule B (Form 990, 990-EZ, or 990-PF) (2014)
Page 3
Name of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK 		Employer identification number

34-1915691
Part II
Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
Schedule B (Form 990, 990-EZ, or 990-PF) (2014)

Schedule B (Form 990, 990-EZ, or 990-PF) (2014)
Page 4
Name of organization
BASAL CELL CARCINOMA NEVUS
SYNDROME LIFE SUPPORT NETWORK 		Employer identification number

34-1915691
Part III
Exclusively religious, charitable, etc., contributions to organizations described in section 501(c)(7), (8), or (10)
that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) Arrow Bullet$  
Use duplicate copies of Part III if additional space is needed.
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
Schedule B (Form 990, 990-EZ, or 990-PF) (2014)

Additional Data


Software ID:  
Software Version:  
SCHEDULE D
(Form 990)
Department of the Treasury
Internal Revenue Service
Supplemental Financial Statements
SchDMd Bullet 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.
Information about Schedule D (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2014
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 value of contributions to (during year)    
3 Aggregate value of grants from (during year)    
4 Aggregate value at end of year ........    
5
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? ............
6
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? ...................................
Part II
Conservation Easements. Complete if the organization answered "Yes" to Form 990, Part IV, line 7.
1
Purpose(s) of conservation easements held by the organization (check all that apply).
2
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.
Held at the End of the 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  
3
Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during
the tax year SchDMd Bullet  
4
Number of states where property subject to conservation easement is located SchDMd Bullet  
5
Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and
enforcement of the conservation easements it holds? .............................
6
Staff and volunteer hours devoted to monitoring, inspecting, and enforcing conservation easements during the year
SchDMd Bullet  
7
Amount of expenses incurred in monitoring, inspecting, and enforcing conservation easements during the year
SchDMd Bullet $  
8
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)? .......................................
9
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.
1a
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.
b
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)
Revenue included in Form 990, Part VIII, line 1 ........................SchDMd Bullet $  
(ii)
Assets included in Form 990, Part X ..............................SchDMd Bullet $  
2
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:
a
Revenue included in Form 990, Part VIII, line 1 ..........................SchDMd Bullet $  
b
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) 2014

Schedule D (Form 990) 2014
Page 2
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
3
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):
a
d
b
e
 
c
4
Provide a description of the organization’s collections and explain how they further the organization’s exempt purpose in
Part XIII.
5
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?........
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.
1a
Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not
included on Form 990, Part X? ....................................
b
If "Yes," explain the arrangement in Part XIII and complete the following table:
Amount
c Beginning balance ................................. 1c  
d Additions during the year .............................. 1d  
e Distributions during the year ............................. 1e  
f Ending balance ................................... 1f  
2a
Did the organization include an amount on Form 990, Part X, line 21, for escrow or custodial account liability?
b
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 ......          
2
Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:
a
Board designated or quasi-endowment SchDMd Bullet  
b
Permanent endowment SchDMd Bullet  
c
Temporarily restricted endowment SchDMd Bullet  
The percentages in lines 2a, 2b, and 2c should equal 100%.
3a
Are there endowment funds not in the possession of the organization that are held and administered for the
organization by:

Yes
No
(i) unrelated organizations ........................
3a(i)
 
 
(ii) related organizations ........................
3a(ii)
 
 
b
If "Yes" to 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
 
 
4
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 (a) Cost or other basis (investment) (b)Cost or other basis (other) (c) Accumulated depreciation (d) Book value
1a Land .................      
b Buildings ................        
c Leasehold improvements ............        
d Equipment ................   13,578 11,871 1,707
e Other .................        
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).).......SchDMdBullet 1,707
Schedule D (Form 990) 2014

Schedule D (Form 990) 2014
Page 3
Part VII
Investments—Other 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.)Small Bullet  
Part VIII
Investments—Program 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.)Small Bullet  
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.)...........Small Bullet  
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.)Small Bullet  
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) 2014

Schedule D (Form 990) 2014
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 (losses) 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) 2014

Additional Data


Software ID:  
Software Version:  




SCHEDULE O
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service
Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ 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
2014
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 SOCIETY MOHS SURGEONS (ASMS); CONTINUING EDUCATION "AAD & AADA RESEARCH AGENDA CONSENSUS CONFERENCE ""ONE VOICE AGAINST CANCER" DEVELOPMENT AND ADVOCACY 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 TWO WELL-RECEIVED, ENTHUSIASTICALLY ATTENDED, REGIONAL MEETINGS IN ORLANDO, FL AND BURTON, OH IN 2014, 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 1,200 DISTINCT INDIVIDUALS; OVER 13,500 RANDOM ATTENDEES. THE EDUCATIONAL PROGRAMMING REACHES THOUSANDS MORE THROUGH DISTRIBUTION OF DISEASE SPECIFIC MATERIALS, CLINICAL TRIAL PARTICIPATION, MEDICAL PROFESSIONAL CONFERENCES, ONLINE SOCIAL MEDIA AVENUES (FACEBOOK, TWITTER, LINKEDIN) AND DIRECT CONTACT VIA TELEPHONE, E- MAIL, WEBSITE AND IN- PERSON INTERACTION. WE BEGAN THE PROCESS OF UPGRADING OUR WEBSITE TO ENSURE THAT IT IS MORE USER AND MOBILE FRIENDLY. 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 INITIATED THREE NEW RESEARCH PROGRAMS IN 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. THE NETWORK CONDUCTED THREE NATION-WIDE SURVEYS FOR PEDIATRIC BCCNS; ADULTS WITH BCCNS; AND MELANOMA AND INDOOR TANNING. POST CONFERENCE AND REGIONAL MEETING EVALUATIONS WERE COMPLETED BY 87% OF ATTENDEES AND OFFERED INSIGHT FOR FUTURE PROGRAMMING AND NEEDS ASSESSMENT. SATISFACTION WAS 90 PLUS IN 85 PERCENTILE OF ATTENDEES FOR ALL VENUES. THE NETWORK DEVELOPED, PRODUCED AND DISTRIBUTED COLLATERAL MATERIALS, NEWSLETTERS, EDUCATIONAL ARTICLES, INFORMATION ON CLINICAL TRIALS, ONLINE FORUM AND SOCIAL MEDIA AVENUES WHICH ARE ALL AVAILABLE ON THE NETWORK'S ORGANIZATIONAL WEBSITE. THE WEBSITE RECEIVED 9,253 UNIQUE VISITORS AND 13,610 VISITS WITH 46,439 PAGE VIEWS. 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). STAFF, SUBCONTRACTORS AND VOLUNTEERS CONTINUE TO BUILD CONSTITUENT RELATIONS, MANAGE DAY-TO-DAY OPERATIONS, AND COORDINATE ALL COMMUNICATIONS, SCHEDULE APPOINTMENTS, AND TRIAGE MEMBER NEEDS FOR SERVICES. 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 EXPANDED 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 ORLANDO, FL AND BURTON, OH IN 2014, 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 31 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 2015.
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 2014 COMPENSATION PAID TO THE EXECUTIVE DIRECTOR WAS 22,000. NONTAXABLE FRINGE BENEFITS PROVIDED AMOUNTED TO 7,278.
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) 2014

Additional Data


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