Form990
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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)
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generally cannot redact the information on the form.
MediumBullet Information about Form 990 and its instructions is at www.IRS.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
A For the 2013 calendar year, or tax year beginning 01-01-2013 , 2013, and ending 12-31-2013
BCheck if applicable:
CName of organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Doing Business As
TUBEROUS SCLEROSIS ALLIANCE
 
Number and street (or P.O. box if mail is not delivered to street address)
801 ROEDER ROAD NO 750
 
Room/suite
City or town, state or province, country, and ZIP or foreign postal code
SILVER SPRING, MD20910
D Employer identification number

95-3018799
E Telephone number

G Gross receipts $ 4,385,212
F Name and address of principal officer:
KARI L ROSBECK
801 ROEDER ROAD NO 750
SILVER SPRING,MD20910
I
Tax-exempt status: (   ) LeftBullet (insert no.) or
J
Website:MediumBullet
WWW.TSALLIANCE.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: 1975
M State of legal domicile: CA
Part I
Summary
Activities & Governance 1 Briefly describe the organization’s mission or most significant activities: THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, D/B/A TUBEROUS SCLEROSIS ALLIANCE, IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS WHILE IMPROVING THE LIVES OF THOSE AFFECTED.
2 Check this box MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a) ........ 3 25
4 Number of independent voting members of the governing body (Part VI, line 1b) ..... 4 25
5 Total number of individuals employed in calendar year 2013 (Part V, line 2a) ...... 5 15
6 Total number of volunteers (estimate if necessary) ............. 6 2,000
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 0
Revenues Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 3,199,643 3,239,048
9 Program service revenue (Part VIII, line 2g) ......... 202,786 983,127
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 9,669 13,800
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) -67,798 -84,729
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)................... 3,344,300 4,151,246
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 839,957 903,892
14 Benefits paid to or for members (Part IX, column (A), line 4)..... 0 0
15 Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10) 1,253,071 1,438,637
16a Professional fundraising fees (Part IX, column (A), line 11e)..... 16,500 16,500
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet632,282    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e).... 1,379,176 1,726,952
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 3,488,704 4,085,981
19 Revenue less expenses. Subtract line 18 from line 12....... -144,404 65,265
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 7,963,191 9,171,713
21 Total liabilities (Part X, line 26)............. 119,036 724,870
22 Net assets or fund balances. Subtract line 21 from line 20..... 7,844,155 8,446,843
Part II
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May the IRS discuss this return with the preparer shown above? (see instructions) ............
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Cat. No. 11282Y
Form 990 (2013)
Form 990 (2013)
Page 2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response or note to any line in this Part III ..............
1
Briefly describe the organization’s mission: THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THE AFFECTED.
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 $ 2,037,048 including grants of $ 903,892 ) (Revenue $ 1,825,634 )
RESEARCH PROGRAM STIMULATES AND SUPPORTS BASIC, TRANSLATIONAL, AND CLINICAL RESEARCH ON THE VARIOUS MANIFESTATIONS OF TUBEROUS SCLEROSIS COMPLEX (TSC) TO FURTHER THE DEVELOPMENT OF CLINICAL THERAPIES AND, ULTIMATELY, A CURE FOR TSC. THE TS ALLIANCE HAS FUNDED MORE THAN $17.4 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D., CHIEF SCIENTIFIC OFFICER, THE TS ALLIANCE RESEARCH GRANTS PROGRAM FUNDS RESEARCH FOCUSED ON TSC THAT IS PROPOSED BY RESEARCHERS AND ALIGNED WITH THE RESEARCH PRIORITIES OF THE TS ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, FOR EXAMPLE, BY BIENNIAL INTERNATIONAL TSC RESEARCH CONFERENCES. THROUGH THE TS ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR POSTDOCTORAL FELLOWSHIPS, RESEARCH GRANTS, ROTHBERG COURAGE AWARDS, AND THE DRUG SCREENING PROGRAM. GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: (1) ALL GRANT APPLICATIONS ARE REVIEWED BY A COMMITTEE COMPRISED OF SCIENTISTS KNOWLEDGEABLE ABOUT THE TOPIC AREA FOR SCIENTIFIC MERIT AND OF ADULTS AFFECTED BY TSC FOR POTENTIAL IMPACT ON THE LIVES OF THOSE AFFECTED BY TSC, (2) THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS EVALUATES THE GRANT REVIEW COMMITTEE'S RECOMMENDATIONS AND THE RELEVANCE OF THE APPLICATIONS TO THE TS ALLIANCE'S FUNDING PRIORITIES, AND (3) THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR FUNDING.IMPLEMENTED IN 2006, THE TSC NATURAL HISTORY DATABASE CAPTURES CLINICAL DATA TO DOCUMENT THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER THEIR LIFETIME. AS OF DECEMBER 2013, 1,300 PEOPLE WITH TUBEROUS SCLEROSIS COMPLEX WERE ENROLLED IN THE PROJECT FROM AMONG 15 U.S.-BASED SITES. THE TS ALLIANCE PROVIDES FUNDING TO PARTICIPATING CLINICS TO PERFORM DATA ENTRY, MONITORS THE INTEGRITY OF THE DATABASE, AND MAKES DATA AVAILABLE TO INVESTIGATORS TO ANSWER SPECIFIC RESEARCH QUESTIONS AND IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL TRIALS AND STUDIES. IN 2013, THE TS ALLIANCE INVESTED $484,160 IN THE TSC DATABASE. THIS REPRESENTS A CONSIDERABLE INCREASE OVER PRIOR YEARS FOR TWO REASONS. FIRST, THE TS ALLIANCE BEGAN DEVELOPMENT AND TESTING OF A NEW DATABASE PLATFORM THAT IS BETTER SUITED FOR RESEARCH QUERIES, CAN ACCEPT PATIENT-REPORTED DATA ON QUALITY OF LIFE, AND WILL BE MORE COST EFFECTIVE TO USE. SECOND, MORE FUNDING WAS PROVIDED TO THE 15 PARTICIPATING SITES TO INCREASE ENROLLMENT AND COMPLETENESS OF RECORDS PRIOR TO MOVING TO THE NEW PLATFORM. THE TS ALLIANCE RECEIVED A ONE-YEAR $70,000 GRANT AWARD FROM THE PEDIATRIC EPILEPSY RESEARCH FOUNDATION IN FALL 2013, WHICH WILL UNDERWRITE A PORTION OF THE OPERATIONAL EXPENSES OF THE TSC DATABASE THROUGH 2014. A CONTRACT WITH NOVARTIS WAS EXECUTED IN NOVEMBER 2012 TO PROVIDE TS ALLIANCE WITH FUNDING TO ENHANCE AND GROW THE TSC DATABASE THROUGH 2015. THE TS ALLIANCE HOSTED THE 2013 INTERNATIONAL RESEARCH CONFERENCE ON TSC AND RELATED DISORDERS: MOLECULES TO MEDICINES ON JUNE 20-23, 2013, AT THE OMNI SHOREHAM HOTEL IN WASHINGTON, DC. NEARLY 200 RESEARCHERS, CLINICIANS AND OTHER CONSTITUENTS ATTENDED THIS SUCCESSFUL AND PRODUCTIVE CONFERENCE. THE CONFERENCE'S OPENING SESSION REVEALED NEW DATA ON MULTIPLE CELLULAR MECHANISMS THAT IMPACT MTOR ACTIVITY, WHICH IS ELEVATED IN TSC. SOME OF THESE MECHANISMS ARE ASSOCIATED WITH DRUGS BEING TESTED IN ANIMAL MODELS OF TSC. THE CONFERENCE'S KEYNOTE ADDRESS BY DR. MUSTAFA SAHIN OF BOSTON CHILDREN'S HOSPITAL DISCUSSED HOW ALTERATIONS IN CONNECTIONS BETWEEN NEURONS IN THE BRAIN OF INDIVIDUALS WITH TSC MAY BE RESPONSIBLE FOR THE NEUROLOGIC AND NEUROPSYCHIATRIC PROBLEMS THAT SO FREQUENTLY OCCUR IN TSC. A SESSION ON CLINICAL STUDIES COVERED LESSONS LEARNED FROM PAST CLINICAL TRIALS IN TSC AND IDEAS FOR FUTURE CLINICAL TRIALS IN TSC. THE SESSION ON GENETICS REVEALED THAT NO THIRD GENE HAS YET BEEN IDENTIFIED TO CAUSE TSC AND THAT MANY INDIVIDUALS IN WHOM MUTATIONS COULD NOT BE IDENTIFIED ARE NOW BEING FOUND TO BE MOSAIC FOR TSC1 OR TSC2 MUTATIONS, MEANING ONLY SOME OF THOSE PERSONS' CELLS CARRY MUTATIONS. THE FINAL TWO SESSIONS OF THE CONFERENCE DISCUSSED BOTH ANIMAL MODELS AND CLINICAL DATA FROM WHICH WE ARE LEARNING MORE ABOUT THE TSC DISEASE PROCESS AND HOW WE MIGHT IDENTIFY NEW TREATMENTS OR HOW WE MIGHT MORE EFFECTIVELY DELIVER CARE USING EXISTING TREATMENTS. WORKING GROUPS HELD DURING THE CONFERENCE ENABLED ATTENDEES FROM ALL DIFFERENT BACKGROUNDS TO TACKLE SPECIFIC QUESTIONS OR PROBLEMS, INCLUDING HOW TO ACHIEVE THE BEST COMPREHENSIVE CLINICAL CARE FOR INDIVIDUALS WITH TSC AND HOW TO UTILIZE AND DEVELOP A BIOBANK OF TISSUE AND BLOOD OR URINE SAMPLES FROM PEOPLE WITH TSC. A TOTAL OF 16 RESEARCH AWARDS WERE FUNDED DURING 2013 FOR $903,892. THE TS ALLIANCE ROTHBERG COURAGE AWARD FOR RESEARCH CONTINUED SUPPORTING THREE ONGOING PROJECTS: (1) THE DEVELOPMENT OF SEIZURE TRACKER AS AN EPILEPSY CLINICAL TRIAL TOOL; (2) THE TSC NEUROCOGNITIVE TRIAL, A CLINICAL STUDY OF EVEROLIMUS EFFECTS ON NEUROCOGNITION AT CHILDREN'S HOSPITAL BOSTON AND CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER; (3) A STUDY BY DR. ELIZABETH HENSKE (BRIGHAM & WOMEN'S HOSPITAL) TO DETERMINE WHETHER INHIBITION OF AUTOPHAGY MIGHT KILL ABNORMALLY GROWING CELLS IN TSC. THE TS ALLIANCE CONTINUED TO SUPPORT NINE RESEARCH GRANTS AWARDED IN PREVIOUS YEARS. ADDITIONALLY, FIVE NEW RESEARCH AWARDS WERE ANNOUNCED THIS YEAR; FUNDING BEGAN IN 2013 FOR THREE OF THESE, AND FUNDING OF THE OTHERS WILL BEGIN IN 2014. THE THREE NEWLY FUNDED AWARDS BEGINNING IN 2013 WERE TO (1) DR. CARMEN PRIOLO (BRIGHAM AND WOMEN'S HOSPITAL) TO STUDY POTENTIAL BIOMARKERS IN BLOOD TO ASSESS PROGRESSION OF LAM, (2) DR. REBECCA IHRIE (VANDERBILT UNIVERSITY) TO STUDY THE CELLULAR ORIGIN OF SUBEPENDYMAL GIANT CELL ASTROCYTOMAS IN TSC TO DETERMINE NEW APPROACHES TO TREATMENT, AND (3) DR. DAVID KWIATKOWSKI (BRIGHAM AND WOMEN'S HOSPITAL) TO COLLECT AND ANALYZE BIOSAMPLES FROM A NEW EUROPEAN CLINICAL TRIAL TO TREAT OR PREVENT INFANTILE SPASMS IN TSC. AMONG THE NINE ONGOING GRANTS, THE TSC DRUG SCREENING PROGRAM CONTINUED SPONSORING RESEARCH BY DR. JEANNIE LI (HARVARD UNIVERSITY) TO IDENTIFY NEW WAYS OF TREATING TSC BY BLOCKING THE ABILITY OF CELLS WITH TSC1/TSC2 LOSS TO USE SPECIAL NUTRIENT SOURCES AND, THEREFORE, SELECTIVELY KILL THESE CELLS WITHOUT KILLING NORMAL CELLS. THE DRUG SCREENING PROGRAM ALSO CONTINUED TO SUPPORT PROJECTS TESTING DRUGS FOR THEIR POTENTIAL TO INFLUENCE NEUROLOGIC MANIFESTATIONS OF TSC. DR. MUSTAFA SAHIN (CHILDREN'S HOSPITAL BOSTON) IS WORKING TO IDENTIFY COMPOUNDS THAT REVERSE CHANGES INDUCED BY LOSS OF TSC2 IN CULTURED NEURONS AND TO UNDERSTAND THEIR IMPACT ON LEARNING AND BEHAVIORAL DEFECTS IN MICE DEFICIENT IN TSC1 OR TSC2. DR. SEOK-HYUNG KIM (VANDERBILT UNIVERSITY) IS SCREENING COMPOUNDS TO REVERSE ABNORMAL NEURONAL PHENOTYPES IN TSC2 MUTANT ZEBRAFISH.THE FINAL RESEARCH AWARD CONSISTED OF $240,252 TO HELP SUPPORT THE TSC CLINICAL RESEARCH CONSORTIUM AND LEVERAGE NIH FUNDING. THE FIVE CLINICS COMPRISING THIS CONSORTIUM RECEIVED NIH GRANTS TO CONDUCT TWO CLINICAL STUDIES INITIATED IN 2013 THAT ARE ENROLLING PARTICIPANTS AHEAD OF SCHEDULE. THESE TWO CLINICAL STUDIES WILL (1) DETERMINE WHAT EARLY SIGNS OR TESTS CAN IDENTIFY INFANTS WITH TSC AT HIGHEST RISK OF DEVELOPING AUTISM BY AGE THREE, AND (2) MEASURE THE ABILITY OF EEG AND BRAIN IMAGING TO ASSESS THE RISK OF NEWLY DIAGNOSED INFANTS WITH TSC TO DEVELOP INFANTILE SPASMS. THE BIOMARKERS RESULTING FROM STUDIES WILL HAVE A MAJOR IMPACT ON OUR ABILITY TO INTERVENE VERY EARLY TO PREVENT SOME OF THE MOST DEVASTATING MANIFESTATIONS OF TSC. ADDITIONALLY, THE COORDINATED WORK TO EXECUTE BOTH OF THESE STUDIES WILL DEVELOP INFRASTRUCTURE AND PROCESSES TO FORM THE BASIS OF AN ONGOING AND GROWING TSC CLINICAL RESEARCH NETWORK. AS TRANSLATIONAL RESEARCH IN TSC PRODUCES ADDITIONAL IDEAS FOR CLINICAL STUDIES, THE EFFICIENT INITIATION AND CONDUCT OF FUTURE CLINICAL TRIALS WILL BENEFIT FROM HAVING THIS INFRASTRUCTURE IN PLACE TO ENABLE INVESTIGATORS TO QUICKLY AND AFFORDABLY EXECUTE STUDIES. THE TS ALLIANCE'S CHIEF SCIENTIFIC OFFICER IS ON THE LEADERSHIP TEAM OF THE CONSORTIUM.
4b (Code:   ) (Expenses $ 714,679 including grants of $   ) (Revenue $ 118,000 )
FAMILY SERVICES DEVELOPS PROGRAMS AND SERVICES THAT PROVIDE INDIVIDUALS WITH TSC DIRECT ACCESS TO THE INFORMATION, RESOURCES, AND SPECIALISTS EXPERIENCED IN THE DIAGNOSIS, TREATMENT AND MANAGEMENT OF TSC. THE OUTREACH DEPARTMENT PROVIDED SUPPORT AND RESOURCES TO 2,272 INDIVIDUALS AND FAMILIES DEALING WITH TSC. THE DIRECTOR OF ADVOCACY AND EDUCATION ATTENDED 26 INDIVIDUAL EDUCATION PROGRAM (IEP) MEETINGS IN PERSON, THROUGH SKYPE, AND VIA CONFERENCE CALLS TO SUPPORT FAMILIES IN GETTING EDUCATIONAL SERVICES FOR THEIR CHILDREN THROUGHOUT THE COUNTRY. IN 2013 THERE WERE THERE ARE 23 EDUCATIONAL LIAISON VOLUNTEERS, WORKING IN 23 STATES, TO CONNECT FAMILIES TO FREE EDUCATIONAL ADVOCACY TRAININGS IN COLLABORATION WITH THE STATES' PARENT TRAINING AND INFORMATION CENTERS. OVER THE PAST YEAR THERE HAVE BEEN MORE THAN 1,000 FREE PARENT TRAININGS AND WEBINARS ON EDUCATIONAL ADVOCACY OFFERED TO FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. A NEW EDUCATIONAL ADVOCACY PUBLICATION WAS DEVELOPED TO HELP YOUNG ADULTS SELF-ADVOCATE AT THE COLLEGE LEVEL "WHAT COLLEGE PROFESSORS NEED TO KNOW ABOUT TSC."THERE WERE 9 ADULT TOPIC CALLS HELD ON TOPICS SPECIFIC TO INDEPENDENT AND SEMI-INDEPENDENT ADULTS WITH TSC. A PILOT ADULT TOPIC CALL WAS HELD FOR PARENTS OF DEPENDENT ADULTS AND A DEPENDENT ADULT TASK FORCE DEVELOPED TO ADDRESS THE NEEDS OF THIS POPULATION. THE ADULT REGIONAL COORDINATOR PROGRAM DEVELOPED TO SUPPORT ADULTS ONE ON ONE SUPPORTED 1,077 ADULTS WITH TSC THROUGHOUT THE COUNTRY. FINALLY, THE TS ALLIANCE ONLINE SOCIAL NETWORK THROUGH "INSPIRE" HELPS TO CONNECT INDIVIDUALS AND FAMILIES DEALING WITH TSC AND GET SUPPORT FROM EACH OTHER'S EXPERIENCE. PRESENTLY THE TSC POPULATION THROUGH INSPIRE INCLUDES 2,154 MEMBERS FROM 79 COUNTRIES AS OF DECEMBER 31, 2013. IN ADDITION, THE TSC CLINIC AMBASSADORS PROGRAM SUPPORTED 238 INDIVIDUALS AND FAMILIES ONE ON ONE IN EIGHT TSC CLINICS LOCATED IN MIAMI, FL; CINCINNATI, OH; COLUMBUS, OH; ATLANTA, GA; NASHVILLE, TN; BIRMINGHAM, AL; DENVER, CO, AND DALLAS, TX.THROUGH THE NETWORK OF 32 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, LOCAL EDUCATION AND SUPPORT GROUP MEETINGS ARE HELD THROUGHOUT THE COUNTRY. THE TS ALLIANCE HOSTED 20 EDUCATIONAL MEETINGS AND 33 GATHERINGS HELD AT COMMUNITY ALLIANCE LOCATIONS DURING THE FISCAL YEAR 2013. THESE MEETINGS FACILITATED STRONGER CONNECTIONS AND PEERS, RESEARCHERS, AND CLINICIANS IN THE COMMUNITY AND EDUCATED THE TSC COMMUNITY ABOUT CLINICAL TRIALS, RESEARCH AND TREATMENT OPTIONS FOR THOSE LIVING WITH TSC.
4c (Code:   ) (Expenses $ 196,950 including grants of $   ) (Revenue $   )
PUBLIC HEALTH EDUCATION HEIGHTENS AWARENESS OF TSC THROUGHOUT THE GENERAL PUBLIC TO BROADEN THE SCOPE OF SUPPORT AND UNDERSTANDING BEYOND TSC INDIVIDUALS AND THEIR FAMILIES. DURING 2013, THE TS ALLIANCE PRODUCED THREE ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO MORE THAN 13,700 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THOUGH ITS WEBSITE VIA 950,000 TO 1.2 MILLION HITS MONTHLY FROM AN AVERAGE OF MORE THAN 35,000 UNIQUE VISITORS. THE SITE'S ONLINE MAIL LIST FORM CONTINUES TO CAPTURE 50 OR MORE NEW CONSTITUENTS EVERY MONTH. THE TS ALLIANCE RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS FACEBOOK GROUP BOASTS MORE THAN 5,300 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 800-PLUS FOLLOWERS. THE TS ALLIANCE ALSO PROVIDES PUBLIC EDUCATION THROUGH A SERIES OF REGIONAL TSC CONFERENCES; FOUR WERE HELD IN 2013 INCLUDING GRAND RAPIDS, MI; NEW YORK, NY; BIRMINGHAM, AL; AND KANSAS CITY, MO. TO INCREASE PUBLIC AWARENESS, THE TS ALLIANCE HEAVILY PROMOTED TSC GLOBAL AWARENESS DAY ON MAY 15. THIS YEAR'S EVENT INTRODUCED A DEDICATED WEBSITE - TSCGLOBALDAY.ORG, TO HOUSE A "WHERE IN THE WORLD IS TSC?" SOCIAL MEDIA/PHOTO CAMPAIGN WHICH GARNERED 473 PICTURES FROM 34 COUNTRIES AS WELL AS A HUGE FACEBOOK/TWITTER PUSH. IN ADDITION, THE TS ALLIANCE PRESIDENT & CEO AND ITS CHIEF SCIENTIFIC OFFICER PARTICIPATED IN 10 RADIO INTERVIEWS, WHICH ULTIMATELY AIRED ON 735 STATIONS REACHING MORE THAN 9.7 MILLION LISTENERS. FINALLY, LONG-TIME TS ALLIANCE SUPPORTER AND FAMED ACTRESS JULIANNE MOORE RECORDED A TSC GLOBAL AWARENESS DAY PSA, WHICH WAS PLAYED 1,326 TIMES ON 154 DIFFERENT STATIONS, REACHING 4.9 MILLION. THE TS ALLIANCE ALSO PARTICIPATED IN A MEDIA TOURS IN PARTNERSHIP WITH NOVARTIS AND THE SPECIAL OLYMPICS, SHARING THE STORY OF TWO TSC SPECIAL OLYMPIANS. IN MAY, TS ALLIANCE PRESIDENT AND CEO PARTICIPATED IN 10 INTERNET MEDIA BASED INTERVIEWS WITH KATHY GROVES WHO TALKED ABOUT HER FAMILY, LIFE WITH TSC, AND HER SON RYAN AND HIS PARTICIPATION IN THE SPECIAL OLYMPICS. THE CSO PARTICIPATED IN A RADIO MEDIA TOUR IN NOVEMBER REACHING A TOTAL LISTENERSHIP OF 3,376,000 WITH PLACEMENT ON 17 NETWORKS. THE MEDIA TOUR INCLUDED MANDY AND SCOTT STRIEGEL, WHO ADDRESSED THE FAMILY'S EXPERIENCES LIVING WITH TSC, ESPECIALLY THEIR SON STEVEN'S PARTICIPATION IN THE SPECIAL OLYMPICS. TO HELP EDUCATE PEOPLE WITH TSC, PHYSICIANS AND THE GENERAL PUBLIC, THE TS ALLIANCE PRODUCED AND RELEASED EIGHT NEW EDUCATIONAL VIDEOS IN 2013.
(Code:   ) (Expenses $ 142,520 including grants of $   ) (Revenue $   )
GOVERNMENT RELATIONS FOCUSES ON EDUCATING MEMBERS OF CONGRESS ABOUT TSC TO FURTHER TSC RESEARCH, AWARENESS AND CLINICAL CARE. IN 2013, THE TS ALLIANCE GRASSROOTS VOLUNTEERS CONDUCTED A MARCH ON CAPITOL HILL RESULTING IN 74 MEMBERS OF THE HOUSE OF REPRESENTATIVES SIGNING A LETTER OF SUPPORT CIRCULATED BY REPRESENTATIVE LORETTA SANCHEZ (D-CA) AND 10 SENATORS SIGNING A BIPARTISAN LETTER OF SUPPORT CIRCULATED BY SENATOR RON WYDEN (D-OR) FOR FY14 APPROPRIATIONS. THE US CONGRESS APPROPRIATED $6 MILLION FOR FY14 TO TSC RESEARCH THROUGH THE DEPARTMENT OF DEFENSE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM. THE TSC RESEARCH PROGRAM (TSCRP) ADMINISTERED FROM THE APPROPRIATION IS A COMPETITIVE PEER REVIEW GRANT PROGRAM. ACCORDING TO THE U.S. ARMY MEDICAL RESEARCH AND MATERIAL COMMAND, CDMRP, TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM REPORT "TODAY, THE TSCRP IS ONE OF THE LEADING SOURCES OF EXTRAMURAL TSC RESEARCH FUNDING IN THE UNITED STATES. THE TSCRP FILLS IMPORTANT GAPS IN TSC RESEARCH NOT ADDRESSED BY OTHER FUNDING AGENCIES." A HALLMARK ACHIEVEMENT IS TSCRP-SUPPORTED RESEARCH THAT EXAMINED THE ROLE THAT TSC GENES PLAY IN CELL GROWTH AND PROLIFERATION-SPECIFICALLY IN CONTROLLING THE MAMMALIAN TARGET OF RAPAMYCIN (MTOR) SIGNALING PATHWAY IN CELLS. THIS RESEARCH RAPIDLY LED TO CLINICAL TRIALS, RESULTING IN THE FIRST DRUG APPROVED BY THE FDA SPECIFICALLY FOR TREATMENT OF INDIVIDUALS WITH TSC. RESEARCH DONE THROUGH THIS PROGRAM HAS RECENTLY LED TO ADDITIONAL CLINICAL TRIALS INCLUDING; TESTING A COMBINATION OF TWO DRUGS TO TREAT LYMPHANGIOLEIOMYOMATOSIS (LAM), A LIFE-THREATENING LUNG MANIFESTATION OF TSC FUNDED IN FY2012; A MULTI-SITE CLINICAL TRIAL TESTING THE EFFICACY OF AN EXPERIMENTAL TOPICAL RAPAMYCIN CREAM TO TREAT THE DISFIGURING FACIAL TUMORS, FACIAL ANGIOFIBROMAS, CAUSED BY TSC FUNDED IN FY2010; A CLINICAL RESEARCH NETWORK WAS CREATED TO TEST POTENTIAL NEW THERAPIES, TO VALIDATE BIOMARKERS, AND TO LEARN THE NATURAL HISTORY OF LEADING TO A CLINICAL TRIAL FUNDED IN FY2012. BUILDING UPON FY2010-FUNDED RESEARCH ON GLUTAMATE RECEPTORS (MGLUR5), SEVERAL COMPANIES ARE NOW LOOKING DEVELOPING DRUGS TO THE LINK BETWEEN COGNITIVE IMPAIRMENTS IN TSC TO AUTISM, ANXIETY, AND OTHER MENTAL DISORDERS. THE TSCRP HAS ALSO FUNDED RESEARCH TO DEVELOP ANIMAL MODELS OF TSC THAT HAVE SEIZURES, ENABLING A BETTER UNDERSTANDING OF THE ETIOLOGY OF TSC. IN 2013 A CLINICAL TRIAL BEGAN TO TEST MTOR INHIBITORS TO TREAT EPILEPSY IN INDIVIDUALS WITH TSC. NONE OF THIS PROGRESS WOULD HAVE BEEN POSSIBLE WITHOUT THE CRITICAL SUPPORT PROVIDED THROUGH THE TSCRP.ADDITIONAL GOVERNMENT RELATIONS EFFORTS INCLUDED A CONGRESSIONAL BRIEFING ON CAPITOL HILL TO COMMEMORATE TSC GLOBAL AWARENESS DAY ON MAY 15, 2013. CONGRESSIONAL STAFF AND KEY MEMBERS OF THE TSC RESEARCH AND GRASSROOTS COMMUNITIES ATTENDED THE EVENT.
(Code:   ) (Expenses $ 22,826 including grants of $   ) (Revenue $   )
PROFESSIONAL EDUCATION EXPANDS PROGRAMS TO TARGET RESEARCHERS AND HEALTHCARE PROVIDERS CARING FOR INDIVIDUALS WITH TSC, MEDICAL STUDENTS, GENETIC COUNSELORS AND EDUCATORS TO MINIMIZE THE CONSEQUENCES OF IGNORANCE AND MISINFORMATION. THE TS ALLIANCE FUNDED THE OPEN-ACCESS PUBLICATION OF TWO PEER-REVIEWED ARTICLES IN THE JOURNAL PEDIATRIC NEUROLOGY TO MAKE AVAILABLE TO HEALTHCARE PROVIDERS WORLDWIDE THE LATEST RECOMMENDATIONS ON THE DIAGNOSIS, SURVEILLANCE, AND MANAGEMENT OF TSC FROM THE 2012 TSC CLINICAL CONSENSUS CONFERENCE. THE TS ALLIANCE ALSO CO-SPONSORED A CONTINUING MEDICAL EDUCATION PROGRAM WITH PEERVIEW INSTITUTE AND THE UNIVERSITY OF FLORIDA THAT IS AVAILABLE FREE TO PHYSICIANS TO EDUCATE THEM ON THE PUBLISHED CONSENSUS RECOMMENDATIONS. ADDITIONALLY, THE TS ALLIANCE WORKED WITH OTHER ADVOCACY GROUPS REPRESENTING RARE EPILEPSY SYNDROMES TO HELP IMPLEMENT SOME OF THE RECOMMENDATIONS FROM AN INSTITUTE OF MEDICINE REPORT ON THE EPILEPSIES, INCLUDING BUILDING THE HERO WEBSITE TO ENABLE INDIVIDUALS WITH EPILEPSY TO LOCATE RELEVANT CLINICAL STUDIES.THE TS ALLIANCE PARTICIPATED IN AND PRESENTED AT SEVERAL PROFESSIONAL MEETINGS INCLUDING: LAM FOUNDATION CONFERENCE; WORLD ORPHAN DRUG CONGRESS; ASSOCIATION OF CLINICAL RESEARCH PROFESSIONALS CONFERENCE; INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE); THE NINDS NONPROFIT FORUM; NORD/DIA ANNUAL CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS; PARTNERING FOR CURES; CHILD NEUROLOGY SOCIETY ANNUAL MEETING; AND TSC RESEARCH CONFERENCES IN GERMANY AND NORWAY. IN ADDITION, AT THE AMERICAN EPILEPSY SOCIETY (AES) ANNUAL MEETING THE TS ALLIANCE HOSTED A TSC RECEPTION FOR MORE THAN 50 RESEARCHERS AND PARTICIPATED IN TWO SPECIAL INTEREST GROUP SCIENTIFIC SESSIONS, ONE ON TSC AND ANOTHER ON RESEARCH RESOURCES MADE AVAILABLE BY NON-PROFIT ORGANIZATIONS ADVOCATING FOR RARE DISORDERS THAT INVOLVE EPILEPSY. THE TS ALLIANCE ALSO MANAGES AN ONLINE PORTAL FOR HEALTHCARE PROFESSIONALS CALLED "VEOMED" TO ENCOURAGE INFORMATION EXCHANGE. THERE ARE CURRENTLY 75 PROFESSIONALS USING THIS PORTAL, WHICH ALSO SERVES AS A RESOURCE FOR PROFESSIONALS NOT FAMILIAR WITH TSC SEEKING GUIDANCE FROM PEERS. A MONTHLY ONLINE NEWSLETTER CALLED TSC ALERT IS SENT TO NEARLY 1,000 MEDICAL PROFESSIONALS AND SCIENTISTS. FURTHER, THE DIRECTOR OF ADVOCACY AND EDUCATION HAS ONGOING COLLABORATION WITH NATIONAL EDUCATIONAL NETWORKS, SUCH AS THE ASSOCIATION FOR MIDDLE LEVEL EDUCATION (AMLE). SHE ALSO COLLABORATES WITH PARENT TRAINING INFORMATION CENTERS (PTIS) THROUGHOUT THE COUNTRY. PROVIDING CHILDREN WITH APPROPRIATE EDUCATION IS THE KEY TO INDIVIDUALS HAVING A GOOD QUALITY OF LIFE.
4d Other program services (Describe in Schedule O.)
(Expenses $ 165,346 including grants of $   ) (Revenue $   )
4e Total program service expensesMediumBullet3,114,023
Form 990 (2013)
Form 990 (2013)
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 IClick to see attachment..........
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 IIClick to see attachment........
4
Yes
 
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 IIIClick to see attachment............................
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
Yes
 
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
Yes
 
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
Yes
 
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
Yes
 
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......... Click to see attachment
14b
Yes
 
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 IVClick to see attachment
15
Yes
 
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... Click to see attachment
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).... Click to see attachment
17
Yes
 
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............ Click to see attachment
18
Yes
 
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................... Click to see attachment
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 (2013)
Form 990 (2013)
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 government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II... Click to see attachment
21
Yes
 
22
Did the organization report more than $5,000 of grants or other assistance to individuals in the United States on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........ Click to see attachment
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....................... Click to see attachment
23
Yes
 
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) and 501(c)(4) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I........
25a
 
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 so, 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..Click to see attachment
29
Yes
 
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M............. Click to see attachment
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........ Click to see attachment
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........................ Click to see attachment
34
Yes
 
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............. Click to see attachment
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 VIClick to see attachment
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 (2013)
Form 990 (2013)
Page 5
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response or note to any line in this Part V ..............
Yes
No
1a
Enter the number reported in Box 3 of Form 1096 Enter -0- if not applicable ..
1a
29
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
15
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
Yes
 
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 Form TD F 90-22.1, Report of Foreign Bank and Financial Accounts.
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
Yes
 
b
If "Yes," did the organization notify the donor of the value of the goods or services provided?.....
7b
Yes
 
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
 
 
f
Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract?..
7f
 
 
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 and section 509(a)(3) supporting organizations. Did the supporting organization, or a donor advised fund maintained by a sponsoring organization, have excess business holdings at any time during the year?............
8
 
 
9
Sponsoring organizations maintaining donor advised funds.
a
Did the organization make any taxable distributions under section 4966?..........
9a
 
 
b
Did the 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 (2013)
Form 990 (2013)
Page 6
Part VI
Governance, Management, and Disclosure For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.
Check if Schedule O contains a response or note to any line in this Part VI ..............
Section A. Governing Body and Management
Yes
No
1a
Enter the number of voting members of the governing body at the end of the tax year .....................
1a
25
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
25
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
 
No
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
Yes
 
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
Yes
 
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
Yes
 
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
Yes
 
11a
Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? ............................
11a
Yes
 
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
Yes
 
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
Yes
 
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
MD , CA , DC , ND , AK , AZ , RI , PA , CO , MA , NH , NY , NC , OH , OR , VA , CT , ME , GA , NV , AR , HI , IL , KS , KY , TN , MI , NJ , NM , UT , MN , WV , OK , WY , FL , AL , WA , SC , WI , MS , LA , TX , MO , DE , ID , IN , IA
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, physical address, and telephone number of the person who possesses the books and records of the organization:
MediumBulletTHE ORGANIZATION801 ROEDER ROAD NO 750SILVER SPRINGMD20910 (301) 562-9890
Form 990 (2013)
Form 990 (2013)
Page 7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response or note to any line in this Part VII ..............
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees
1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
RoundBullet List all of the organization’s current officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.

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) MATT BOLGER........................................................................
CHAIR
 5.00
.......................   		X   X       0 0 0
(2) KEITH HALL........................................................................
VICE CHAIR
 5.00
.......................   		X   X       0 0 0
(3) HENRY SHAPIRO........................................................................
IMMEDIATE PAST CHAIR
 5.00
.......................   		X   X       0 0 0
(4) DAVID MICHAELS........................................................................
TREASURER
 5.00
.......................1.00 		X   X       0 0 0
(5) REIKO DONATO........................................................................
SECRETARY
 5.00
.......................   		X   X       0 0 0
(6) MARTINA BEBIN........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(7) DAVID PARKES........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(8) CELIA MASTBAUM........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(9) JULIE BLUM........................................................................
BOARD MEMBER
 3.00
.......................   		X           0 0 0
(10) MARK CARROLL........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(11) RITA DIDOMENICO........................................................................
BOARD MEMBER
 2.00
.......................1.00 		X           0 0 0
(12) PETER CRINO MD PHD........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(13) DAVID FITZMAURICE........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(14) JENNIFER GLASSMAN........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(15) STEVEN GOLDSTEIN........................................................................
BOARD MEMBER
 2.00
.......................1.00 		X           0 0 0
(16) RON HEFFRON........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(17) LINDA JACKSON........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
Form 990 (2013)
Form 990 (2013)
Page 8
Part VII
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (continued)
(A)
Name and Title 		(B)
Average hours per week (list any hours for related organizations below dotted line) 		(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee) 		(D)
Reportable compensation from the organization (W- 2/1099-MISC) 		(E)
Reportable compensation from related organizations (W- 2/1099-MISC) 		(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(18) LAURA LUBBERS........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(19) DEBORA MORITZ........................................................................
BOARD MEMBER
 5.00
.......................   		X           0 0 0
(20) THEODORE MASTROIANNI........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(21) ALAN MARSHALL........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(22) COURTNEY O'MALLEY........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(23) JOHN NICHOLSON........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(24) REBECCA ANHANG PRICE........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(25) JUDITH SHOULAK........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(26) ELIZABETH THIELE MD PHD........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(27) KARI L ROSBECK........................................................................
PRESIDENT & CEO
 50.00
.......................5.00 		    X       137,053 13,705 26,627
(28) MARY JANE PERRAUT........................................................................
CHIEF FINANCIAL OFFICER
 40.00
.......................5.00 		    X       107,852 13,481 10,895
(29) STEVEN L ROBERDS........................................................................
CHIEF SCIENTIFIC OFFICER
 45.00
.......................   		      X     163,642 0 27,013


1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)............MediumBullet 408,547 27,186 64,535
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organizationMediumBullet2
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
Yes
 
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 $100,000 of compensation from the organization MediumBullet0
Form 990 (2013)
Form 990 (2013)
Page 9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this Part VIII .............
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512-514
Contributions, Gifts, GrantAmt and OtherAmt Similar Amounts 1a Federated campaigns..1a 75,476
b Membership dues....1b  
c Fundraising events....1c 1,410,318
d Related organizations...1d 197,200
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and
similar amounts not included above1f 		1,556,054
g Noncash contributions included in lines
1a-1f:$ 		47,984
h Total. Add lines 1a-1f.......MediumBullet 3,239,048
Program Service RevenueAmt Business Code
2a CONTRACT REVENUE 900099 779,327 779,327    
b CONFERENCE REVENUE 900099 203,800 203,800    
c
d
e
f All other program service revenue .        
g Total. Add lines 2a–2f........MediumBullet 983,127
OtherAmt RevenueAmt 3 Investment income (including dividends, interest, and other similar amounts).......MediumBullet 13,335     13,335
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 124,940  
b Less: cost or other basis and sales expenses 124,475  
c Gain or (loss) 465  
d Net gain or (loss)..........MediumBullet 465     465
8a Gross income from fundraising events (not including
$ 1,410,318
of contributions reported on line 1c). See Part IV, line 18 ..
a 18,778
b Less: direct expenses ...b 109,491
c Net income or (loss) from fundraising events..MediumBullet -90,713   -90,713
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 OTHER 900099 5,984     5,984
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ...... MediumBullet 5,984
12 Total revenue. See Instructions......MediumBullet 4,151,246 983,127 0 -70,929
Form 990 (2013)
Form 990 (2013)
Page 10
Part IX
Statement of Functional Expenses
Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).Check if Schedule O contains a response or note to any line in this Part IX ...............
Do not include amounts reported on lines 6b,
7b, 8b, 9b, and 10b of Part VIII. 		(A)
Total expenses 		(B)
Program service expenses 		(C)
Management and general expenses 		(D)
Fundraising expenses
1 Grants and other assistance to governments and organizations in the United States. See Part IV, line 21 855,892 855,892
2 Grants and other assistance to individuals in the United States. See Part IV, line 22    
3 Grants and other assistance to governments, organizations, and individuals outside the United States. See Part IV, lines 15 and 16 48,000 48,000
4 Benefits paid to or for members    
5 Compensation of current officers, directors, trustees, and key employees .... 512,765 303,716 67,489 141,560
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 736,109 436,773 96,553 202,783
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) .... 21,951 12,872 2,945 6,134
9 Other employee benefits ....... 77,945 45,708 10,458 21,779
10 Payroll taxes ........... 89,867 52,693 12,060 25,114
11 Fees for services (non-employees):        
a Management ......        
b Legal ......... 18,750 1,023 17,727  
c Accounting ........... 32,440   32,440  
d Lobbying ........... 102,517 102,517    
e Professional fundraising services. See Part IV, line 17 16,500 16,500
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) ........ 60,607 32,685 12,922 15,000
12 Advertising and promotion ....        
13 Office expenses ....... 271,024 138,576 60,949 71,499
14 Information technology ...... 97,960 39,620 55,593 2,747
15 Royalties ..        
16 Occupancy ........... 83,642 120 83,402 120
17 Travel ............ 208,463 168,588 3,066 36,809
18 Payments of travel or entertainment expenses for any federal, state, or local public officials ......        
19 Conferences, conventions, and meetings .... 158,908 141,024 16,568 1,316
20 Interest ...........        
21 Payments to affiliates .......        
22 Depreciation, depletion, and amortization ..... 110,683 90,422 20,261  
23 Insurance .............. 8,421   8,421  
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 NATURAL HISTORY DATABAS 484,160 484,160    
b BANK AND CREDIT CARD FE 50,182 0 35,130 15,052
c EQUIPMENT & MAINTENANCE 20,593 697 18,959 937
d ALLOCATIONS 0 156,156 -229,921 73,765
e All other expenses 18,602 2,781 14,654 1,167
25 Total functional expenses. Add lines 1 through 24e 4,085,981 3,114,023 339,676 632,282
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). 79,936 39,968 0 39,968
Form 990 (2013)
Form 990 (2013)
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 ............. 2,334,967 1 3,054,646
2 Savings and temporary cash investments ......... 492,140 2 248,045
3 Pledges and grants receivable, net ........... 336,000 3 162,675
4 Accounts receivable, net ............. 86,517 4 326,326
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 .............. 4,395 8 0
9 Prepaid expenses and deferred charges .......... 155,998 9 181,502
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a 553,970
b Less: accumulated depreciation ..... 10b 350,469 100,412 10c 203,501
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 ........... 4,452,762 15 4,995,018
16 Total assets. Add lines 1 through 15 (must equal line 34)...... 7,963,191 16 9,171,713
Liabilities 17 Accounts payable and accrued expenses ......... 117,408 17 230,387
18 Grants payable .................   18  
19 Deferred revenue ................ 1,628 19 494,483
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......... 119,036 26 724,870
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 .............. 5,255,154 27 5,953,119
28 Temporarily restricted net assets ........... 1,709,557 28 1,614,280
29 Permanently restricted net assets ........... 879,444 29 879,444
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 ........... 7,844,155 33 8,446,843
34 Total liabilities and net assets/fund balances ........ 7,963,191 34 9,171,713
Form 990 (2013)
Form 990 (2013)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response or note to any line in this Part XI ..............
1
Total revenue (must equal Part VIII, column (A), line 12) ............
1
4,151,246
2
Total expenses (must equal Part IX, column (A), line 25) ............
2
4,085,981
3
Revenue less expenses. Subtract line 2 from line 1 ..............
3
65,265
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..
4
7,844,155
5
Net unrealized gains (losses) on investments ...............
5
21
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
537,401
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 33, column (B))
10
8,446,843
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
Yes
 
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
Yes
 
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 (2013)
Form 990, Special Condition Description:
Special Condition Description
Additional Data


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

Department of the Treasury
Internal Revenue Service
Public Charity Status and Public Support
Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
right arrow Attach to Form 990 or Form 990-EZ. right arrow See separate instructions.
right arrow Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public
Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I
Reason for Public Charity Status (All organizations must complete this part.) See instructions.
The organization is not a private foundation because it is: (For lines 1 through 11, check only one box.)
1
2
3
4
5
section 170(b)(1)(A)(iv). (Complete Part II.)
6
7
8
9
receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 331/3% of
its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses
acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)
10
11
e
f
g
(i) A person who directly or indirectly controls, either alone or together with persons described in (ii)
Yes
No
and (iii) below, the governing body of the supported organization? ................
11g(i)
 
 
(ii) A family member of a person described in (i) above? ......................
11g(ii)
 
 
(iii) A 35% controlled entity of a person described in (i) or (ii) above? ................
11g(iii)
 
 
h
Provide the following information about the supported organization(s).
(i) Name of supported organization (ii) EIN (iii) Type of organization (described on lines 1- 9 above or IRC section (see instructions)) (iv) Is the organization in col. (i) listed in your governing document? (v) Did you notify the organization in col. (i) of your support? (vi) Is the organization in col. (i) organized in the U.S.? (vii) Amount of monetary support
Yes No Yes No Yes No
Total  

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990EZ.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 2
Part II
Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 of Part I or if the organization failed to qualify under Part III. If the organization fails to qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2009 (b) 2010 (c) 2011 (d) 2012 (e) 2013 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .... 3,221,297 1,449,542 3,812,563 3,199,643 3,239,048 14,922,093
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 3,221,297 1,449,542 3,812,563 3,199,643 3,239,048 14,922,093
5 The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f).. 1,461,893
6 Public support. Subtract line 5 from line 4. 13,460,200
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2009 (b) 2010 (c) 2011 (d) 2012 (e) 2013 (f) Total
7 Amounts from line 4.. 3,221,297 1,449,542 3,812,563 3,199,643 3,239,048 14,922,093
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... 4,704 7,821 9,722 9,794 13,335 45,376
9 Net income from unrelated business activities, whether or not the business is regularly carried on..            
10 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part IV.).. 3,967 5,728 13,037 23,048 5,984 51,764
11 Total support (Add lines 7 through 10). 15,019,233
12
12
1,517,705
13
First five years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a 501(c)(3) organization, check this box and stop here.................................................right arrow
Section C. Computation of Public Support Percentage
14
14
89.620 %
15
15
97.490 %
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) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 9 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2009 (b) 2010 (c) 2011 (d) 2012 (e) 2013 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .            
2 Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose......            
3 Gross receipts from activities that are not an unrelated trade or business under section 513..            
4 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...            
5 The value of services or facilities furnished by a governmental unit to the organization without charge..            
6 Total. Add lines 1 through 5.            
7a Amounts included on lines 1, 2, and 3 received from disqualified persons...            
b Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.            
c Add lines 7a and 7b..            
8 Public support (Subtract line 7c from line 6.)  
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2009 (b) 2010 (c) 2011 (d) 2012 (e) 2013 (f) Total
9 Amounts from line 6...            
10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..            
b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.            
c Add lines 10a and 10b.            
11 Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on.            
12 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part IV.) ..            
13 Total support. (Add lines 9, 10c, 11, and 12.)..            
14
Section C. Computation of Public Support Percentage
15
15
 
16
16
 
Section D. Computation of Investment Income Percentage
17
17
 
18
18
 
19a
b
20
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 4
Part IV
Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; and Part III, line 12. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Explanation
 
 
 
 
Schedule A (Form 990 or 990-EZ) 2013

Additional Data


Software ID:  
Software Version:  
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
2013
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
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) (2013)

Schedule B (Form 990, 990-EZ, or 990-PF) (2013)
Page 2
Name of organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
  		Employer identification number

95-3018799
Part I
Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
RESTRICTED
RESTRICTED
 

   
RESTRICTED
RESTRICTED
RESTRICTED, RESTRICTEDRESTRICTED

$RESTRICTED


(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) (2013)

Schedule B (Form 990, 990-EZ, or 990-PF) (2013)
Page 3
Name of organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
  		Employer identification number

95-3018799
Part II
Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
(a) No.
from
Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(see instructions) 		(d)
Date received
 
$    
Schedule B (Form 990, 990-EZ, or 990-PF) (2013)

Schedule B (Form 990, 990-EZ, or 990-PF) (2013)
Page 4
Name of organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
  		Employer identification number

95-3018799
Part III
Exclusively religious, charitable, etc., individual contributions to section 501(c)(7), (8), or (10) organizations
that total more than $1,000 for the year. Complete columns (a) through (e) and the following line entry.
For organizations completing Part III, enter the total of exclusively religious, charitable, etc.,
contributions of $1,000 or less for the year. (Enter this information once. See instructions.) Arrow Bullet$  
Use duplicate copies of Part III if additional space is needed.
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a) No.
from
Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
Schedule B (Form 990, 990-EZ, or 990-PF) (2013)

Additional Data


Software ID:  
Software Version:  
SCHEDULE C
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service
Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527
SchCMd Bullet Complete if the organization is described below.SchCMd Bullet Attach to Form 990 or Form 990-EZ.
SchCMd Bullet See separate instructions.SchCMd Bullet Information about Schedule C (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public
Inspection
If the organization answered "Yes" to Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" to Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" to Form 990, Part IV, Line 5 (Proxy Tax) or Form 990-EZ, Part V, line 35c (Proxy Tax), then
Round Bullet Section 501(c)(4), (5), or (6) organizations: Complete Part III.
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I-A
Complete if the organization is exempt under section 501(c) or is a section 527 organization.

1
Provide a description of the organization’s direct and indirect political campaign activities in Part IV.
2
Political expenditures ....................................SchCMd Bullet
$  
3
Volunteer hours ........................................
 

Part I-B
Complete if the organization is exempt under section 501(c)(3).
1
Enter the amount of any excise tax incurred by the organization under section 4955 .........SchCMd Bullet
$  
2
Enter the amount of any excise tax incurred by organization managers under section 4955 ......SchCMd Bullet
$  
3
If the organization incurred a section 4955 tax, did it file Form 4720 for this year? ..............
4a
Was a correction made? .........................................
b
If "Yes," describe in Part IV.
Part I-C
Complete if the organization is exempt under section 501(c), except section 501(c)(3).
1
Enter the amount directly expended by the filing organization for section 527 exempt function activities SchCMd Bullet
$  
2
Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ...................................SchCMd Bullet

$  
3
Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b..SchCMd Bullet

$  
4
Did the filing organization file Form 1120-POL for this year? ..........................
5
Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.
(a) Name (b) Address (c) EIN (d) Amount paid from filing organization's funds. If none, enter -0-. (e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.










For Paperwork Reduction Act Notice, see the instructions for Form 990 or 990-EZ.
Cat. No. 50084S
Schedule C (Form 990 or 990-EZ) 2013

Schedule C (Form 990 or 990-EZ) 2013
Page 2
Part II-A
Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).
A Check SchCMd Bulletexpenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet
Limits on Lobbying Expenditures
(The term "expenditures" means amounts paid or incurred.) 		(a) Filing
organization's
totals 		(b) Affiliated group
totals
1a Total lobbying expenditures to influence public opinion (grass roots lobbying) ...... 919  
b Total lobbying expenditures to influence a legislative body (direct lobbying) ....... 141,601  
c Total lobbying expenditures (add lines 1a and 1b) ................... 142,520  
d Other exempt purpose expenditures ........................ 3,940,692  
e Total exempt purpose expenditures (add lines 1c and 1d) ............... 4,083,212  
f Lobbying nontaxable amount. Enter the amount from the following table in both
columns.		 354,161  
If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
Not over $500,00020% of the amount on line 1e.
Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
Over $17,000,000$1,000,000.
g Grassroots nontaxable amount (enter 25% of line 1f) ................. 88,540  
h Subtract line 1g from line 1a. If zero or less, enter -0-. ................ 0  
i Subtract line 1f from line 1c. If zero or less, enter -0-. ................ 0  
j If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting
section 4911 tax for this year? ......................................

4-Year Averaging Period Under Section 501(h)
(Some organizations that made a section 501(h) election do not have to complete all of the five
columns below. See the instructions for lines 2a through 2f on page 4.)
Lobbying Expenditures During 4-Year Averaging Period
Calendar year (or fiscal year
beginning in) 		(a) 2010 (b) 2011 (c) 2012 (d) 2013 (e) Total
2a Lobbying nontaxable amount 226,416 334,138 323,610 354,161 1,238,325
b Lobbying ceiling amount
(150% of line 2a, column(e)) 		1,857,488
c Total lobbying expenditures 74,182 163,120 141,410 142,520 521,232
d Grassroots nontaxable amount 56,604 83,535 80,903 88,540 309,582
e Grassroots ceiling amount
(150% of line 2d, column (e))		 464,373
f Grassroots lobbying expenditures 7,007 7,688 16,179 919 31,793
Schedule C (Form 990 or 990-EZ) 2013


Schedule C (Form 990 or 990-EZ) 2013
Page 3
Part II-B
Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).
For each "Yes" response to lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.
(a)
No
Yes
(b)
Amount
1
During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:
a
Volunteers? .........................................
 
 
b
Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ....
 
 
c
Media advertisements? ....................................
 
 
 
d
Mailings to members, legislators, or the public? .........................
 
 
 
e
Publications, or published or broadcast statements? .......................
 
 
 
f
Grants to other organizations for lobbying purposes? .......................
 
 
 
g
Direct contact with legislators, their staffs, government officials, or a legislative body? ........
 
 
 
h
Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ......
 
 
 
i
Other activities? ..........................
 
 
 
j
Total. Add lines 1c through 1i ...............................
 
2a
Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....
 
 
b
If "Yes," enter the amount of any tax incurred under section 4912 .................
 
c
If "Yes," enter the amount of any tax incurred by organization managers under section 4912 .....
 
d
If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? .......
 
 
Part III-A
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).
Yes
No
1
Were substantially all (90% or more) dues received nondeductible by members? ................
1
 
 
2
Did the organization make only in-house lobbying expenditures of $2,000 or less? ................
2
 
 
3
Did the organization agree to carry over lobbying and political expenditures from the prior year? ..........
3
 
 
Part III-B
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."
1
Dues, assessments and similar amounts from members .....................
1
 
2
Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political
expenses for which the section 527(f) tax was paid).
a
Current year .........................................
2a
 
b
Carryover from last year ....................................
2b
 
c
Total ............................................
2c
 
3
Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .
3
 
4
If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ................................
4
 
5
Taxable amount of lobbying and political expenditures (see instructions) ..............
5
 
Part IV
Supplemental Information
Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, line 2; and Part ll-B, line 1. Also, complete this part for any additional information.
Return Reference Explanation
Schedule C (Form 990 or 990EZ) 2013

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. SchDMd Bullet See separate instructions. SchDMd Bullet Information about Schedule D (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I
Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" to Form 990, Part IV, line 6.
(a) Donor advised funds (b) Funds and other accounts
1 Total number at end of year .........    
2 Aggregate contributions to (during year) ...    
3 Aggregate grants from (during year) .....    
4 Aggregate value at end of year ........    
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)
Revenues 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
Revenues 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) 2013

Schedule D (Form 990) 2013
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? .....................
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 .... 4,457,365 4,221,150 4,443,045 3,866,081 3,750,509
b Contributions ........ 42,690 43,996 29,825 13,835 13,523
c Net investment earnings, gains, and losses 718,381 420,983 -47,583 584,775 312,223
d Grants or scholarships .....          
e Other expenditures for facilities
and programs ........ 		197,200 202,000 175,000   210,174
f Administrative expenses .... 26,470 26,764 29,137 21,646  
g End of year balance ...... 4,994,766 4,457,365 4,221,150 4,443,045 3,866,081
2
Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:
a
Board designated or quasi-endowment SchDMd Bullet78.070 %
b
Permanent endowment SchDMd Bullet17.610 %
c
Temporarily restricted endowment SchDMd Bullet4.320 %
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)
 
No
(ii) related organizations ........................
3a(ii)
Yes
 
b
If "Yes" to 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
Yes
 
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 ............   150,655 16,142 134,513
d Equipment ................   14,829 9,112 5,717
e Other .................   388,486 325,215 63,271
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).).......SchDMdBullet 203,501
Schedule D (Form 990) 2013

Schedule D (Form 990) 2013
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
(1) INTEREST IN NET ASSETS OF AFFILIATE 4,994,766
(2) DUE FROM AFFILIATE 252







Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........Small Bullet 4,995,018
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) 2013

Schedule D (Form 990) 2013
Page 4
Part XI Reconciliation of Revenue per Audited Financial Statements With Revenue per Return Complete if the organization answered 'Yes' to Form 990, Part IV, line 12a.
1 Total revenue, gains, and other support per audited financial statements ....... 1 4,186,343
2 Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a Net unrealized gains on investments .......... 2a 21
b Donated services and use of facilities ......... 2b 35,076
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIII.) ............ 2d  
e Add lines 2a through 2d ..................... 2e 35,097
3 Subtract line 2e from line 1..................... 3 4,151,246
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 0
5 Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ...... 5 4,151,246
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 4,121,056
2 Amounts included on line 1 but not on Form 990, Part IX, line 25:
a Donated services and use of facilities .......... 2a 35,076
b Prior year adjustments .............. 2b  
c Other losses ................ 2c  
d Other (Describe in Part XIII.) ............ 2d  
e Add lines 2a through 2d...................... 2e 35,076
3 Subtract line 2e from line 1..................... 3 4,085,980
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 0
5 Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ...... 5 4,085,980
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
PART V, LINE 4: THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S ENDOWMENT INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENDOWMENT FUNDS AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE.
PART X, LINE 2: THE ALLIANCE BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR INCOME TAX POSITIONS TAKEN. THEREFORE, MANAGEMENT HAS NOT IDENTIFIED ANY UNCERTAIN INCOME TAX POSITIONS. GENERALLY, INCOME TAX RETURNS RELATED TO THE CURRENT AND THREE PRIOR YEARS REMAIN OPEN FOR EXAMINATION BY TAXING AUTHORITIES.
Schedule D (Form 990) 2013

Additional Data


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Software Version:  




SCHEDULE F(Form 990)
Department of the Treasury
Internal Revenue Service
Statement of Activities Outside the United States
Right pointing arrow large image Complete if the organization answered "Yes" to Form 990,Part IV, line 14b, 15, or 16.Right pointing arrow large image Attach to Form 990. Right pointing arrow large image See separate instructions.Right pointing arrow large image Information about Schedule F (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I
General Information on Activities Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 14b.
1
For grantmakers.Does the organization maintain records to substantiate the amount of its grants and
other assistance, the grantees’ eligibility for the grants or assistance, and the selection criteria used
to award the grants or assistance? ...............................
2
For grantmakers. Describe in Part V the organization’s procedures for monitoring the use of its grants and other assistance outside the United States.
3
Activites per Region. (The following Part I, line 3 table can be duplicated if additional space is needed.)
(a) Region (b) Number of offices in the region (c) Number of employees, agents, and independent contractors in region (d) Activities conducted in region (by type) (e.g., fundraising, program services, investments, grants to recipients located in the region) (e) If activity listed in (d) is a program service, describe specific type of
service(s) in region		 (f) Total expenditures
for and investments
in region
EUROPE 0 0 GRANTS TO RECIPIENTS RESEARCH AWARDS 48,000
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
3a Sub-total ..... 0 0 48,000
b Total from continuation sheets to Part I ... 0 0 0
c Totals (add lines 3a and 3b) 0 0 48,000
For Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2013
Schedule F (Form 990) 2013
Page 2
Part II
Grants and Other Assistance to Organizations or Entities Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 15, for any recipient who received more than $5,000. Part II can be duplicated if additional space is needed.
1 (a) Name of organization (b) IRS code section
and EIN (if applicable)		 (c) Region (d) Purpose of
grant 		(e) Amount of
cash grant 		(f) Manner of
cash
disbursement 		(g) Amount
of non-cash
assistance 		(h) Description
of non-cash
assistance 		(i) Method of
valuation
(book, FMV,
appraisal, other)
EUROPE RESEARCH GRANT 48,000 CHECK     CASH
             
             
             
             
             
             
             
             
             
             
             
             
             
             
             
2 Enter total number of recipient organizations listed above that are recognized as charities by the foreign country, recognized as tax-exempt by the IRS, or for which the grantee or counsel has provided a section 501(c)(3) equivalency letter ....MediumBullet
 
3
Enter total number of other organizations or entities .......................MediumBullet
 
Schedule F (Form 990) 2013
Schedule F (Form 990) 2013Page 3
Part III
Grants and Other Assistance to Individuals Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 16.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Region (c) Number of recipients (d) Amount of
cash grant 		(e) Manner of cash
disbursement 		(f) Amount of
non-cash
assistance 		(g) Description
of non-cash
assistance 		(h) Method of
valuation
(book, FMV,
appraisal, other)
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
Schedule F (Form 990) 2013
Schedule F (Form 990) 2013
Page 4
Part IV
Foreign Forms
1 Was the organization a U.S. transferor of property to a foreign corporation during the tax year? If "Yes,"the organization may be required to file Form 926, Return by a U.S. Transferor of Property to a Foreign Corporation (see Instructions for Form 926)......................................
2 Did the organization have an interest in a foreign trust during the tax year? If "Yes," the organization may be required to file Form 3520, Annual Return to Report Transactions with Foreign Trusts and Receipt of Certain Foreign Gifts, and/or Form 3520-A, Annual Information Return of Foreign Trust With a U.S. Owner (see Instructions for Forms 3520 and 3520-A).......................................
3 Did the organization have an ownership interest in a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 5471, Information Return of U.S. Persons with Respect to Certain Foreign Corporations. (see Instructions for Form 5471)..............................
4 Was the organization a direct or indirect shareholder of a passive foreign investment company or a qualified electing fund during the tax year? If “Yes,” the organization may be required to file Form 8621, Information Return by a Shareholder of a Passive Foreign Investment Company or Qualified Electing Fund. (see Instructions for Form 8621)...............................................
5 Did the organization have an ownership interest in a foreign partnership during the tax year? If "Yes," the organization may be required to file Form 8865, Return of U.S. Persons with Respect to Certain Foreign Partnerships. (see Instructions for Form 8865)....................................
6 Did the organization have any operations in or related to any boycotting countries during the tax year? If "Yes," the organization may be required to file Form 5713, International Boycott Report (see Instructions for Form 5713)................................................
Schedule F (Form 990) 2013
Schedule F (Form 990) 2013
Page 5
Part V
Supplemental Information
Provide the information required by Part I, line 2 (monitoring of funds); Part I, line 3, column (f) (accounting method; amounts of investments vs. expenditures per region); Part II, line 1 (accounting method); Part III (accounting method); and Part III, column (c) (estimated number of recipients), as applicable. Also complete this part to provide any additional information (see instructions).
ReturnReference Explanation
PART I, LINE 2: GRANTEE ORGANIZATIONS ARE EXPECTED TO FILE ANNUAL PROGRESS REPORTS TO OUTLINED GRANT GOALS AND MILESTONES. THESE REPORTS ARE REVIEWED BY A COMMITTEE OF PEERS. THIS COMMITTEE MAKES DETERMINATIONS BASED ON QUALITY OF WORK TO GOALS IF THE GRANTEE ORGANIZATION WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES.
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
Schedule F (Form 990) 2013
Additional Data


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SCHEDULE G (Form 990 or 990-EZ)
Department of the Treasury
Internal Revenue Service
Supplemental Information Regarding
Fundraising or Gaming Activities
Complete if the organization answered "Yes" to Form 990, Part IV, lines 17, 18, or 19, or if the organization entered more than $15,000 on Form 990-EZ, line 6a. right arrowAttach to Form 990 or Form 990-EZ. right arrowSee separate instructions.
right arrowInformation about Schedule G (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I
Fundraising Activities. Complete if the organization answered "Yes" to Form 990, Part IV, line 17.
Form 990-EZ filers are not required to complete this part.
1
Indicate whether the organization raised funds through any of the following activities. Check all that apply.
a e
b f
c g
d
2a
Did the organization have a written or oral agreement with any individual (including officers, directors, trustees
or key employees listed in Form 990, Part VII) or entity in connection with professional fundraising services?
b
If "Yes," list the ten highest paid individuals or entities (fundraisers) pursuant to agreements under which the fundraiser is
to be compensated at least $5,000 by the organization.
(i) Name and address of individual
or entity (fundraiser) 		(ii) Activity (iii) Did fundraiser have custody or control of contributions? (iv) Gross receipts
from activity 		(v) Amount paid to
(or retained by)
fundraiser listed in
col. (i) 		(vi) Amount paid to
(or retained by)
organization
Yes No
 
BLUE ROOM EVENTS INC
5777 WEST CENTURY BLVD STE 880
 
LOS ANGELES, CA90045 		COMEDY FOR A CURE EVENT   No 237,663 16,500 221,163
             
             
             
             
             
             
             
             
             
Total .................right arrow 237,663 16,500 221,163
3
List all states in which the organization is registered or licensed to solicit contributions or has been notified it is exempt from registration or licensing.
MD, CA, DC, ND, AK, AZ, RI, PA, CO, MA, NH, NY, NC, OH, OR, VA, CT, ME, GA, NV, AR, HI, IL, KS, KY, TN, MI, NJ, NM, UT, MN, WV, OK, WY, FL, AL, WA, SC, WI, MS, LA, TX, MO, DE, ID, IN, IA
For Paperwork Reduction Act Notice, see the Instructions for Form 990or 990-EZ.
Cat. No. 50083H
Schedule G (Form 990 or 990-EZ) 2013
Schedule G (Form 990 or 990-EZ) 2013
Page 2
Part II
Fundraising Events. Complete if the organization answered "Yes" to Form 990, Part IV, line 18, or reported more than $15,000 of fundraising event contributions and gross income on Form 990-EZ, lines 1 and 6b. List events with gross receipts greater than $5,000.
(a) Event #1

WALKS
(event type) 		(b) Event #2

LA COMEDY FOR CURE
(event type) 		(c) Other events

2
(total number) 		(d) Total events
(add col. (a) through col. (c))
VerticalRevenue 1 Gross receipts . . . 1,032,055 237,663 159,378 1,429,096
2 Less: Contributions . . 1,032,055 222,318 155,945 1,410,318
3 Gross income (line 1
minus line 2) . . . 		  15,345 3,433 18,778
VerticalDirectExpenses 4 Cash prizes . . .        
5 Noncash prizes . .        
6 Rent/facility costs . .        
7 Food and beverages .        
8 Entertainment . . .        
9 Other direct expenses . 54,806 41,345 13,340 109,491
10 Direct expense summary. Add lines 4 through 9 in column (d) ........... right arrow 109,491
11 Net income summary. Subtract line 10 from line 3, column (d)........... right arrow -90,713
Part III
Gaming. Complete if the organization answered "Yes" to Form 990, Part IV, line 19, or reported more than $15,000 on Form 990-EZ, line 6a.
VerticalRevenue (a) Bingo (b) Pull tabs/Instant
bingo/progressive bingo 		(c) Other gaming (d) Total gaming (add col.(a) through col.(c))
1 Gross revenue . . . .        
VerticalDirectExpenses 2 Cash prizes . . . .        
3 Non-cash prizes . . .        
4 Rent/facility costs . . .        
5 Other direct expenses . .        
6 Volunteer labor . . .
%
%
%
7 Direct expense summary. Add lines 2 through 5 in column (d) ........... right arrow  
8 Net gaming income summary. Subtract line 7 from line 1, column (d) ......... right arrow  
9
Enter the state(s) in which the organization operates gaming activities:
a
Is the organization licensed to operate gaming activities in each of these states? ............
b
If "No," explain:
 
10a
Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? .....
b
If "Yes," explain:
 
Schedule G (Form 990 or 990-EZ) 2013
Schedule G (Form 990 or 990-EZ) 2013
Page 3
11
Does the organization operate gaming activities with nonmembers? .................
12
Is the organization a grantor, beneficiary or trustee of a trust or a member of a partnership or other entity
formed to administer charitable gaming? ..........................
13
Indicate the percentage of gaming activity operated in:
a
The organization's facility ......................
13a
%
b
An outside facility ........................
13b
%
14
Enter the name and address of the person who prepares the organization's gaming/special events books and records:
Name right arrow
Address right arrow
15a
Does the organization have a contract with a third party from whom the organization receives gaming
revenue? ......................................
b
If "Yes," enter the amount of gaming revenue received by the organization right arrow $   and the
amount of gaming revenue retained by the third party right arrow $   .
c
If "Yes," enter name and address of the third party:
Name right arrow
Address right arrow
 
 
16
Gaming manager information:
Name right arrow
Gaming manager compensation right arrow $  
Description of services provided right arrow
 
17
Mandatory distributions:
a
Is the organization required under state law to make charitable distributions from the gaming proceeds to
retain the state gaming license? ............................
b
Enter the amount of distributions required under state law distributed to other exempt organizations or spent
in the organization's own exempt activities during the tax year right arrow$  
Part IV
Supplemental Information. Provide the explanations required by Part I, line 2b, columns (iii) and (v), and Part III, lines 9, 9b, 10b, 15b, 15c, 16, and 17b, as applicable. Also complete this part to provide any additional information (see instructions).
Return Reference Explanation
PART I, LINE 2B: THE TS ALLIANCE DOES NOT CONTRACT WITH ADDITIONAL PROFESSIONAL FUNDRAISERS.
Schedule G (Form 990 or 990-EZ) 2013
Additional Data


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Software Version:  
Schedule I
(Form 990)
Department of the Treasury
Internal Revenue Service
Grants and Other Assistance to Organizations,
Governments and Individuals in the United States
Complete if the organization answered "Yes," to Form 990, Part IV, line 21 or 22.
lBullet Attach to Form 990
lBullet Information about Schedule I (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public
Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number
95-3018799
Part I
General Information on Grants and Assistance
1
Does the organization maintain records to substantiate the amount of the grants or assistance, the grantees' eligibility for the grants or assistance, and
the selection criteria used to award the grants or assistance? ....................................
2
Describe in Part IV the organization's procedures for monitoring the use of grant funds in the United States.
Part II
Grants and Other Assistance to Governments and Organizations in the United States. Complete if the organization answered "Yes" to
Form 990, Part IV, line 21, for any recipient that received more than $5,000. Part II can be duplicated if additional space is needed.
(a) Name and address of organization
or government		 (b) EIN (c) IRC Code section
if applicable		 (d) Amount of cash grant (e) Amount of non-cash
assistance		 (f) Method of valuation
(book, FMV, appraisal,
other)		 (g) Description of
non-cash assistance		 (h) Purpose of grant
or assistance
(1) BRIGHAM & WOMEN'S HOSPITAL
75 FRANCIS STREET
BOSTON,MA02115 		04-2312909 501(C)(3) 240,717       CLINICAL TRIALS AND RESEARCH GRANTS
(2) VANDERBILT UNIVERSITY MEDICAL CENTER
DEPT OF FINANCE DEPT AT 40303
ATLANTA,GA31192 		62-0476822 501(C)(3) 86,938       RESEARCH GRANT
(3) CHILDREN'S HOSPITAL
PO BOX 414413
BOSTON,MA02241 		04-2774441 501(C)(3) 122,567       RESEARCH GRANT
(4) MASSACHUSETTS GENERAL HOSPITAL
PO BOX 414876
BOSTON,MA02241 		04-2697983 501(C)(3) 33,000       RESEARCH GRANT
(5) CINCINNATI CHILDREN'S HOSPITAL
3333 BURNET AVE ML 7030
CINCINNATI,OH452293039 		31-0833936 501(C)(3) 66,000       RESEARCH GRANT
(6) HARVARD UNIVERSITY
PO BOX 415649
BOSTON,MA022415649 		04-2103580 501(C)(3) 66,000       RESEARCH GRANT












2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................ Bullet Image
6
3
Enter total number of other organizations listed in the line 1 table ........................ . Bullet Image
0
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2013

Schedule I (Form 990) 2013
Page 2
Part III
Grants and Other Assistance to Individuals in the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 22.
Part III can be duplicated if additional space is needed.
(a)Type of grant or assistance (b)Number of
recipients		 (c)Amount of
cash grant		 (d)Amount of
non-cash assistance		 (e)Method of valuation (book,
FMV, appraisal, other)		 (f)Description of non-cash assistance












Part IV
Supplemental Information. Provide the information required in Part I, line 2, Part III, column (b), and any other additional information.
Return Reference Explanation
PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $17.4 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D, CHIEF SCIENTIFIC OFFICER, THE TS ALLIANCE RESEARCH GRANTS PROGRAM FUNDS RESEARCH FOCUSED ON TSC WITH PRIORITIES SET BY THE RESEARCHERS TOGETHER WITH THE TS ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, AND THE TS ALLIANCE IS WORKING TO INCREASE FUNDING FOR RESEARCH ON TSC. THROUGH THE TS ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR: - PREDOCTORAL AWARDS - POSTDOCTORAL & CLINICAL FELLOWSHIPS - TSC INNOVATOR AWARDS (PREVIOUSLY CALLED JR. AND SR. INVESTIGATOR AWARDS) - TSC WORKSHOP/CONFERENCE GRANT AWARDS - TSC SUPPLEMENTAL FUNDING AWARDS - ROTHBERG COURAGE AWARD - DRUG SCREENING AWARD - CLINICAL RESEARCH NETWORK
FORM 990, SCHEDULE I, LINE 2: GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: - A GRANT REVIEW COMMITTEE COMPOSED OF INDIVIDUALS KNOWLEDGEABLE ABOUT THE CLINICAL AND BASIC COMPONENTS OF TSC, REVIEW ALL GRANT APPLICATIONS FOR SCIENTIFIC MERIT, RELEVANCY TO THE FUNDING PRIORITIES OF THE ORGANIZATION AND WITH A FOCUS ON UNDERSTANDING THE MECHANISMS OF TSC AND/OR THE DEVELOPMENT OF TREATMENTS AND THERAPIES FOR THE MANIFESTATIONS OF THE DISEASE. - THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS THEN REVIEW THE RECOMMENDATIONS TO THE BOARD OF DIRECTORS. - THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR THE FUNDING OF GRANT APPLICATIONS.
Schedule I (Form 990) 2013


Additional Data


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Software Version:  


Schedule J
(Form 990)
Department of the Treasury
Internal Revenue Service
Compensation Information
For certain Officers, Directors, Trustees, Key Employees, and Highest
Compensated Employees
SchJMediumBullet Complete if the organization answered "Yes" to Form 990, Part IV, line 23.
SchJMediumBullet Attach to Form 990. SchJMediumBullet See separate instructions.
SchJMediumBullet Information about Schedule J (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I
Questions Regarding Compensation
Yes
No
1a
Check the appropiate box(es) if the organization provided any of the following to or for a person listed in Form
990, Part VII, Section A, line 1a. Complete Part III to provide any relevant information regarding these items.
b
If any of the boxes in line 1a are checked, did the organization follow a written policy regarding payment or reimbursement or provision of all of the expenses described above? If "No," complete Part III to explain....
1b
 
 
2
Did the organization require substantiation prior to reimbursing or allowing expenses incurred by all
directors, trustees, officers, including the CEO/Executive Director, regarding the items checked in line 1a? ..
2
 
 
3
Indicate which, if any, of the following the filing organization used to establish the compensation of the
organization's CEO/Executive Director. Check all that apply. Do not check any boxes for methods
used by a related organization to establish compensation of the CEO/Executive Director, but explain in Part III.
4
During the year, did any person listed in Form 990, Part VII, Section A, line 1a with respect to the filing organization or a related organization:
a
Receive a severance payment or change-of-control payment? ................
4a
 
No
b
Participate in, or receive payment from, a supplemental nonqualified retirement plan? .........
4b
 
No
c
Participate in, or receive payment from, an equity-based compensation arrangement? .........
4c
 
No
If "Yes" to any of lines 4a-c, list the persons and provide the applicable amounts for each item in Part III.
Only 501(c)(3) and 501(c)(4) organizations only must complete lines 5-9.
5
For persons listed in Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the revenues of:
a
The organization? ...........................
5a
Yes
 
b
Any related organization? .........................
5b
 
No
If "Yes," to line 5a or 5b, describe in Part III.
6
For persons listed in Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the net earnings of:
a
The organization? ...........................
6a
 
No
b
Any related organization? .........................
6b
 
No
If "Yes," to line 6a or 6b, describe in Part III.
7
For persons listed in Form 990, Part VII, Section A, line 1a, did the organization provide any non-fixed
payments not described in lines 5 and 6? If "Yes," describe in Part III ............
7
 
No
8
Were any amounts reported in Form 990, Part VII, paid or accured pursuant to a contract that was
subject to the initial contract exception described in Regulations section 53.4958-4(a)(3)? If "Yes," describe
in Part III .............................
8
 
No
9
If "Yes" to line 8, did the organization also follow the rebuttable presumption procedure described in Regulations section 53.4958-6(c)? .........................
9
 
 
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50053T
Schedule J (Form 990) 2013

Schedule J (Form 990) 2013
Page 2
Part II
Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees. Use duplicate copies if additional space is needed.
For each individual whose compensation must be reported in Schedule J, report compensation from the organization on row (i) and from related organizations, described in the
instructions, on row (ii). Do not list any individuals that are not listed on Form 990, Part VII.
Note. The sum of columns (B)(i)-(iii) for each listed individual must equal the total amount of Form 990, Part VII, Section A, line 1a, applicable column (D) and (E) amounts for that individual.
(A) Name and Title (B) Breakdown of W-2 and/or 1099-MISC compensation (C) Retirement and other deferred compensation (D) Nontaxable
benefits		 (E) Total of columns
(B)(i)-(D) 		(F) Compensation
reported as deferred
in prior Form 990
(i) Base compensation (ii) Bonus & incentive compensation (iii) Other reportable compensation
(1)KARI L ROSBECKPRESIDENT & CEO (i)
(ii)		 137,053
13,705 		0
0 		0
0 		4,112
411 		28,045
2,804 		169,210
16,920 		0
0
(2)STEVEN L ROBERDSCHIEF SCIENTIFIC OFFICER (i)
(ii)		 163,642
0 		0
0 		0
0 		4,909
0 		23,958
0 		192,509
0 		0
0
Schedule J (Form 990) 2013

Schedule J (Form 990) 2013
Page 3
Part III
Supplemental Information
Provide the information, explanation, or descriptions required for Part I, lines 1a, 1b, 3, 4a, 4b, 4c, 5a, 5b, 6a, 6b, 7, and 8, and for Part II.
Also complete this part for any additional information.
Return Reference Explanation
PART I, LINE 5 KARI LUTHER ROSBECK, PRESIDENT AND CEO, MARY JANE PERRAUT, CFO, AND STEVE ROBERDS, CSO, ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARY BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE.
FORM 990, SCHEDULE J: KARI LUTHER ROSBECK, PRESIDENT & CEO AND MARY JANE PERRAUT, CFO, ARE EMPLOYEES OF TUBEROUS SCLEROSIS ALLIANCE AND ARE COMPENSATED THROUGH TS ALLIANCE. MS. ROSBECK AND MS. PERRAUT SERVE THE ENDOWMENT WITHOUT COMPENSATION.
Schedule J (Form 990) 2013

Additional Data


Software ID:  
Software Version:  
SCHEDULE M
(Form 990)

Department of the Treasury
Internal Revenue Service
Noncash Contributions
Right pointing arrow large imageComplete if the organizations answered "Yes" on Form 990, Part IV, lines 29 or 30.
Right pointing arrow large image Attach to Form 990.
Right pointing arrow large imageInformation about Schedule M (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I
Types of Property
(a)
Check if applicable 		(b)
Number of contributions or items contributed 		(c)
Noncash contribution amounts reported on
Form 990, Part VIII, line 1g 		(d)
Method of determining
noncash contribution amounts
1 Art—Works of art ....        
2 Art—Historical treasures .        
3 Art—Fractional interests ..        
4 Books and publications ..      
5 Clothing and household
goods ....... 		     
6 Cars and other vehicles ..        
7 Boats and planes ....        
8 Intellectual property ...        
9 Securities—Publicly traded .        
10 Securities—Closely held stock .        
11 Securities—Partnership, LLC,
or trust interests .... 		       
12 Securities—Miscellaneous ..        
13 Qualified conservation
contribution—Historic
structures ..... 		       
14 Qualified conservation
contribution—Other ... 		       
15 Real estate—Residential .        
16 Real estate—Commercial ..        
17 Real estate—Other ...        
18 Collectibles .....        
19 Food inventory ...        
20 Drugs and medical supplies .        
21 Taxidermy ......        
22 Historical artifacts ....        
23 Scientific specimens ..        
24 Archeological artifacts ...        
25 Other Right pointing arrow large image ( SPECIAL EVENT ) X 9 47,984 FMV
26 Other Right pointing arrow large image( )
27 Other Right pointing arrow large image( )
28 Other Right pointing arrow large image ( )
29
Number of Forms 8283 received by the organization during the tax year for contributions
for which the organization completed Form 8283, Part IV, Donee Acknowledgement ...
29
 
Yes
No
30a
During the year, did the organization receive by contribution any property reported in Part I, lines 1 through 28, that
it must hold for at least three years from the date of the initial contribution, and which is not required to be used
for exempt purposes for the entire holding period? ..................
30a
 
No
b
If "Yes," describe the arrangement in Part II.
31
Does the organization have a gift acceptance policy that requires the review of any non-standard contributions?
31
 
No
32a
Does the organization hire or use third parties or related organizations to solicit, process, or sell noncash
contributions? ..........................
32a
 
No
b
If "Yes," describe in Part II.
33
If the organization did not report an amount in column (c) for a type of property for which column (a) is checked,
describe in Part II.
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 51227J
Schedule M (Form 990) (2013)
Schedule M (Form 990) (2013)
Page 2
Part II
Supplemental Information. Provide the information required by Part I, lines 30b,
32b, and 33, and whether the organization is reporting in Part I, column (b), the number of contributions, the number of items received, or a combination of both. Also complete this part for any additional information.
Return Reference Explanation
Schedule M (Form 990) (2013)
Additional Data


Software ID:  
Software Version:  
SCHEDULE O
(Form 990 or 990-EZ)

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

Complete to provide information for responses to specific questions on
Form 990 or to provide any additional information.
MediumBullet Attach to Form 990 or 990-EZ.
MediumBullet Information about Schedule O (Form 990 or 990-EZ) and its instructions is at
www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public
Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Return Reference Explanation
FORM 990, PART VI, SECTION A, LINE 6 MEMBERSHIP IS AVAILABLE TO ANY PERSON WHO SUBSCRIBES TO THE PURPOSES AND OBJECTIVES OF THE CORPORATION, WITHOUT REGARD TO RACE, RELIGION, GENDER, SEXUAL ORIENTATION, AGE, COLOR, NATIONAL ORIGIN OR MENTAL OR PHYSICAL HANDICAP OR DISABILITY. THERE SHALL BE NO LIMIT TO THE NUMBER OF MEMBERS IN THE CORPORATION. 1) THERE MAY BE ONE OR MORE CLASSES OF MEMBERSHIP AS DETERMINED BY THE BOARD. 2) MEMBERSHIP IS NOT TRANSFERABLE OR ASSIGNABLE.
FORM 990, PART VI, SECTION A, LINE 7A THE TS ALLIANCE IS A MEMBERSHIP-BASED ORGANIZATION, WHICH MEANS MEMBERS HELP ELECT THE BOARD OF DIRECTORS. AS SUCH, MEMBERS HAVE A PROFOUND IMPACT ON THE FUTURE OF THE TS ALLIANCE AND ALL THOSE LIVING WITH TSC. MEMBERSHIP GIVES YOU AN IMPORTANT VOICE AND YOUR INVOLVEMENT AS A TS ALLIANCE MEMBER IS IMPORTANT TO US. THE TS ALLIANCE MEMBERSHIP PROGRAM IS COMPOSED OF SEVERAL LEVELS DESIGNED TO GIVE YOU A CHOICE IN HOW YOU PARTICIPATE. WHETHER YOU CHOOSE THE COMPLIMENTARY BASIC MEMBERSHIP OR THE GOLD LEVEL, BEING A MEMBER MEANS BEING A PART OF OUR UNIQUE AND VITAL COMMUNITY. BECAUSE OF ALLIES LIKE YOU, WHOSE FINANCIAL SUPPORT IS VITAL, THE TS ALLIANCE HAS BEEN ABLE TO MAKE QUANTUM LEAPS FORWARD.
FORM 990, PART VI, SECTION B, LINE 11 THE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS AUDIT AND FINANCE COMMITTEES. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED BOTH COMMITTEES VOTE WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE EXECUTIVE COMMITTEE. THE EXECUTIVE COMMITTEE PERFORMS THE FINAL REVIEW AND THEN VOTES WHETHER TO APPROVE ON BEHALF OF THE BOARD OF DIRECTORS. A COPY OF THE APPROVED 990 IS SHARED WITH THE ENTIRE BOARD.
FORM 990, PART VI, SECTION B, LINE 12C ANNUALLY EACH MEMBER OF THE BOARD OF DIRECTORS WILL RECEIVE NOTICE OF THE ORGANIZATION'S CONFLICT OF INTEREST STATEMENT. EACH MEMBER WILL BE PROVIDED WITH A STATEMENT TO MAKE DISCLOSURE OF ANY POTENTIAL CONFLICT OF INTEREST. IF DURING THE COURSE OF THE YEAR A POTENTIAL CONFLICT OF INTEREST ARISES THAT HAS NOT PREVIOUSLY BEEN DISCLOSED, THE BOARD MEMBERS WILL MAKE WRITTEN NOTICE OF A POTENTIAL CONFLICT OF INTEREST AND RECUSE HIMSELF OR HERSELF FROM ANY DISCUSSIONS AND VOTES IN CONNECTION WITH THE ISSUE IDENTIFIED. ANY TIME A MEMBERS IS RECUSED FROM DISCUSSION ON AN ISSUE, THE MINUTES OF COMMITTEE MEETING AND BOARD MEETING WILL DULY RECORD SUCH ACTIONS. FOR FISCAL YEAR 2013: THE FOLLOWING CONFLICTS OF INTEREST WERE DISCLOSED: BOARD MEMBER ELIZABETH THIELE, MD, PHD, IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL, WHICH RECEIVED A $38,624 GRANT FOR THE TSC NATURAL HISTORY DATABASE.
FORM 990, PART VI, SECTION B, LINE 15 THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF STAFF EXECUTIVE OFFICER, THE CHIEF FINANCIAL OFFICER, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TUBEROUS SCLEROSIS ALLIANCE BYLAWS. SUCH REVIEW AND APPROVAL OCCURS INITIALLY UPON HIRING, UPON ANNUAL REVIEWS AND WHENEVER MODIFIED. THE ORGANIZATION'S EXECUTIVE REMUNERATION HAS BEEN STRUCTURED TO ENSURE THAT IT: IS REASONABLE; PROVIDES A COMPETITIVE COMPENSATION PROGRAM TO RETAIN, ATTRACT AND REWARD KEY EMPLOYEES AND ACHIEVES CLEAR ALIGNMENT BETWEEN TOTAL REMUNERATION AND DELIVERED BUSINESS AND PERSONAL PERFORMANCE OVER THE SHORT AND LONG-TERMS. THE COMPENSATION IS REVIEWED BY THE COMPENSATION COMMITTEE TO ENSURE: - COMPARABILITY, - PROPER REVIEW, AND - SUBSTANTIATION IN SETTING THE COMPENSATION.
FORM 990, PART VI, SECTION C, LINE 19 ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST.
FORM 990, PART XI, LINE 9: CHANGE IN INTEREST IN AFFILIATE 537,401.
FORM 990, PART XI, LINE 2C THE AUDIT REVIEW PROCESS HAS REMAIN UNCHANGED FROM THE PRIOR YEAR.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990 or 990-EZ) 2013

Additional Data


Software ID:  
Software Version:  
SCHEDULE R
(Form 990)
Department of the Treasury
Internal Revenue Service
Related Organizations and Unrelated Partnerships
MediumBulletComplete if the organization answered "Yes" on Form 990, Part IV, line 33, 34, 35b, 36, or 37.
MediumBulletAttach to Form 990. MediumBullet See separate instructions.
MediumBullet Information about Schedule R (Form 990) and its instructions is at www.irs.gov/form990.

OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC
 
Employer identification number

95-3018799
Part I
Identification of Disregarded Entities Complete if the organization answered "Yes" on Form 990, Part IV, line 33.
(a)
Name, address, and EIN (if applicable) of disregarded entity


(b)
Primary activity


 		(c)
Legal domicile (state
or foreign country)

 		(d)
Total income


 		(e)
End-of-year assets


 		(f)
Direct controlling
entity










Part II
Identification of Related Tax-Exempt Organizations Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related tax-exempt organizations during the tax year.
(a)
Name, address, and EIN of related organization


(b)
Primary activity


 		(c)
Legal domicile (state
or foreign country)

 		(d)
Exempt Code section


 		(e)
Public charity status
(if section 501(c)(3))

 		(f)
Direct controlling
entity

 		(g)
Section 512(b)(13) controlled entity?
Yes No
(1) TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND

801 ROEDER ROAD 750

SILVER SPRING,MD20910
52-1926919 		TO RECEIVE GIFTS THAT WILL BE INVESTED TO GENERATE PERMANENT INCOME FOR TSA MD 501(C)(3) 509(A)(3) NATIONAL TUBEROUS SCLEROSIS ASSOCIATION (TSA)
 
 
No












For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50135Y
Schedule R (Form 990) 2013
Schedule R (Form 990) 2013
Page 2
Part III
Identification of Related Organizations Taxable as a Partnership Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related organizations treated as a partnership during the tax year.
(a)
Name, address, and EIN of
related organization



 		(b)
Primary activity




 		(c)
Legal
domicile
(state or foreign
country)


 		(d)
Direct controlling
entity



 		(e)
Predominant income(related, unrelated, excluded from tax under sections 512-514)

(f)
Share of total income




 		(g)
Share of end-of-year
assets



 		(h)
Disproprtionate allocations?




 		(i)
Code V-UBI
amount in box 20 of
Schedule K-1
(Form 1065)
 		(j)
General or
managing
partner?



 		(k)
Percentage
ownership
Yes No Yes No












Part IV
Identification of Related Organizations Taxable as a Corporation or Trust Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related organizations treated as a corporation or trust during the tax year.
(a)
Name, address, and EIN of
related organization
 		(b)
Primary activity
 		(c)
Legal
domicile
(state or foreign
country)
 		(d)
Direct controlling
entity
 		(e)
Type of entity
(C corp, S corp,
or trust) 		(f)
Share of total income
 		(g)
Share of end-of-year
assets
 		(h)
Percentage
ownership
 		(i)
Section 512(b)(13) controlled entity?
Yes No












Schedule R (Form 990) 2013
Schedule R (Form 990) 2013
Page 3
Part V
Transactions With Related Organizations Complete if the organization answered "Yes" on Form 990, Part IV, line 34, 35b, or 36.
Note. Complete line 1 if any entity is listed in Parts II, III, or IV of this schedule.
Yes
No
1 During the tax year, did the orgranization engage in any of the following transactions with one or more related organizations listed in Parts II-IV?
a Receipt of (i) interest (ii) annuities (iii) royalties or (iv) rent from a controlled entity . . . . . . . . . . . . . . . . . . . . . . .
1a
 
No
b Gift, grant, or capital contribution to related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1b
 
No
c Gift, grant, or capital contribution from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1c
Yes
 
d Loans or loan guarantees to or for related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1d
 
No
e Loans or loan guarantees by related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1e
 
No
f Dividends from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1f
 
No
g Sale of assets to related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1g
 
No
h Purchase of assets from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1h
 
No
i Exchange of assets with related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1i
 
No
j Lease of facilities, equipment, or other assets to related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1j
 
No
k Lease of facilities, equipment, or other assets from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . .
1k
 
No
l Performance of services or membership or fundraising solicitations for related organization(s) . . . . . . . . . . . . . . . . . . . .
1l
 
No
m Performance of services or membership or fundraising solicitations by related organization(s) . . . . . . . . . . . . . . . . . . . .
1m
 
No
n Sharing of facilities, equipment, mailing lists, or other assets with related organization(s) . . . . . . . . . . . . . . . . . . . . .
1n
Yes
 
o Sharing of paid employees with related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1o
Yes
 
p Reimbursement paid to related organization(s) for expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1p
 
No
q Reimbursement paid by related organization(s) for expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1q
 
No
r Other transfer of cash or property to related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1r
 
No
s Other transfer of cash or property from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1s
 
No
2
If the answer to any of the above is "Yes," see the instructions for information on who must complete this line, including covered relationships and transaction thresholds.
(a)
Name of related organization 		(b)
Transaction
type (a-s) 		(c)
Amount involved 		(d)
Method of determining amount involved
(1) TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND

 C 197,200 CASH





Schedule R (Form 990) 2013
Schedule R (Form 990) 2013
Page 4
Part VI
Unrelated Organizations Taxable as a Partnership Complete if the organization answered "Yes" on Form 990, Part IV, line 37.
Provide the following information for each entity taxed as a partnership through which the organization conducted more than five percent of its activities (measured by total assets or gross revenue) that was not a related organization. See instructions regarding exclusion for certain investment partnerships.
(a)
Name, address, and EIN of entity 		(b)
Primary activity 		(c)
Legal domicile
(state or foreign
country) 		(d)
Predominant income (related, unrelated, excluded from tax under sections 512-514)

(e)
Are all partners
section
501(c)(3)
organizations? 		(f)
Share of total income




 		(g)
Share of
end-of-year
assets 		(h)
Disproprtionate allocations? 		(i)
Code V?UBI
amount in box 20
of Schedule K-1
(Form 1065) 		(j)
General or
managing
partner? 		(k)
Percentage
ownership
Yes No Yes No Yes No






























Schedule R (Form 990) 2013
Schedule R (Form 990) 2013
Page 5
Part VII
Supplemental Information
Provide additional information for responses to questions on Schedule R (see instructions).
Return Reference Explanation
Schedule R (Form 990) 2013
Additional Data


Software ID:  
Software Version: