NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2014
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
- Tax period
- 2014-01-01 to 2014-12-31
- Filed
- 2015-03-24
- IRS object ID
- 201500839349300005
- Schema version
- 2014v5.0
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2015-03-24T08:24:54-05:00 | ReturnTs |
| Tax Period End | 2014-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 521855942 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TATE & TRYON | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2021 L STREET NW | AddressLine1Txt |
| City | WASHINGTON | CityNm |
| State Abbreviation | DC | StateAbbreviationCd |
| ZIP | 20036 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2014-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 953018799 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD NO 750 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KARI L ROSBECK | PersonNm |
| Person Title | PRESIDENT AND CEO | PersonTitleTxt |
| Phone | 3015629890 | PhoneNum |
| Signature | 2015-03-24 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | ELIZABETH HELLER | PreparerPersonNm |
| PTIN | P00397829 | PTIN |
| Phone | 2022932200 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2014 | TaxYr |
| Build TS | 2016-03-07 17:11:31Z | BuildTS |
Form 990 IRS990
Doing Business As Name DoingBusinessAsName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | KARI L ROSBECK | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD NO 750 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $4,632,117 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.TSALLIANCE.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1975 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | 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. | ActivityOrMissionDesc |
| Voting Members Governing Body | 24 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 24 | VotingMembersIndependentCnt |
| Total Employee | 20 | TotalEmployeeCnt |
| Total Volunteers | 2000 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $3,239,048 | PYContributionsGrantsAmt |
| CY Contributions Grants | $3,124,386 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $983,127 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $1,237,559 | CYProgramServiceRevenueAmt |
| PY Investment Income | $13,800 | PYInvestmentIncomeAmt |
| CY Investment Income | $10,654 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$84,729 | PYOtherRevenueAmt |
| CY Other Revenue | $6,348 | CYOtherRevenueAmt |
| PY Total Revenue | $4,151,246 | PYTotalRevenueAmt |
| CY Total Revenue | $4,378,947 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $903,892 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $457,520 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,438,637 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $1,529,944 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $16,500 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $16,500 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $669,490 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $1,726,952 | PYOtherExpensesAmt |
| CY Other Expenses | $2,267,797 | CYOtherExpensesAmt |
| PY Total Expenses | $4,085,981 | PYTotalExpensesAmt |
| CY Total Expenses | $4,271,761 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $65,265 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $107,186 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $9,171,713 | TotalAssetsBOYAmt |
| Total Assets EOY | $8,933,439 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $724,870 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $312,893 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $8,446,843 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $8,620,546 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THE AFFECTED. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $1,508,138 | ExpenseAmt |
| Grant | $433,720 | GrantAmt |
| Revenue | $550,887 | RevenueAmt |
| Desc | 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 $18 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, AND ROTHBERG COURAGE AWARDS. 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 COMMITTEES RECOMMENDATIONS AND THE RELEVANCE OF THE APPLICATIONS TO THE TS ALLIANCES 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 PERSONS HEALTH OVER THEIR LIFETIME. AS OF DECEMBER 2014, 1,500 PEOPLE WITH TUBEROUS SCLEROSIS COMPLEX WERE ENROLLED IN THE PROJECT FROM AMONG 17 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 2014, THE TS ALLIANCE INVESTED $487,708 IN THE TSC DATABASE. THIS SPENDING IS SIMILAR TO 2013 BUT REPRESENTS A CONSIDERABLE INCREASE OVER PRE-2013 YEARS FOR TWO REASONS. FIRST, THE TS ALLIANCE MOVED EXISTING RECORDS TO 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, TWO DATABASE SITES WERE ADDED AND MORE FUNDING WAS PROVIDED TO THE 17 PARTICIPATING SITES TO INCREASE ENROLLMENT AND COMPLETENESS OF RECORDS MOVED TO THE NEW PLATFORM. A CONTRACT WITH NOVARTIS WAS EXECUTED IN NOVEMBER 2012 TO PROVIDE TS ALLIANCE WITH FUNDING TO ENHANCE AND GROW THE TSC DATABASE THROUGH 2015. A TOTAL OF 13 RESEARCH AWARDS AND CLINICAL RESEARCH CONSORTIUM SUPPORT WERE FUNDED DURING 2014 FOR $486,788. THE TS ALLIANCE CONTINUED TO SUPPORT SIX RESEARCH GRANTS AWARDED IN PREVIOUS YEARS. ADDITIONALLY, SEVEN NEW RESEARCH AWARDS WERE FUNDED BEGINNING IN 2014 TO: (1) THE VAN ANDEL RESEARCH INSTITUTE TO INITIATE AND OPERATE A TSC BIOSAMPLE REPOSITORY UNDER THE DIRECTION OF THE TS ALLIANCE, (2) DR. GABRIELLA DARCANGELO (RUTGERS UNIVERSITY) TO DEVELOP HUMAN TSC NEURONS DERIVED FROM INDUCED PLURIPOTENT STEM CELLS, (3) DR. WEI SHI (CHILDRENS HOSPITAL, LOS ANGELES) TO DEVELOP AND TEST A NOVEL MOUSE MODEL OF LAM, (4) DR. GERTA HOXHAJ (HARVARD SCHOOL OF PUBLIC HEALTH) TO STUDY THE ROLE OF THE PROTEIN TBC1D7 IN CELL MIGRATION IN NEURONS AND ANGIOMYOLIPOMAS, (5) DR. MICHAEL HIGLEY (YALE UNIVERSITY) TO LEARN HOW LOSS OF TSC1 DISRUPTS BRAIN SIGNALING CIRCUITS IN MICE, (6) DR. MUSTAFA SAHIN (BOSTON CHILDRENS HOSPITAL) FOR SUPPLEMENTAL SUPPORT OF IMAGING ANALYSIS IN A NEW NIH-FUNDED RARE DISEASES CLINICAL RESEARCH NETWORK (RDCRN), AND (7) BOSTON CHILDRENS HOSPITAL TO ENABLE A FACE-TO-FACE KICK-OFF MEETING FOR THE RDCRN TO FACILITATE A RAPID START TO OPEN COLLABORATION BETWEEN RESEARCHERS WORKING ON THREE RELATED RARE DISORDERS: TSC, PHELAN-MCDERMID SYNDROME, AND PTEN DISORDERS. AMONG THE SIX ONGOING GRANTS, THE TSC DRUG SCREENING PROGRAM CONTINUED SUPPORTING (1) 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, (2) DR. CARMEN PRIOLO (BRIGHAM AND WOMENS HOSPITAL) TO STUDY POTENTIAL BIOMARKERS IN BLOOD TO ASSESS PROGRESSION OF LAM, (3) DR. REBECCA IHRIE (VANDERBILT UNIVERSITY) TO STUDY THE CELLULAR ORIGIN OF SUBEPENDYMAL GIANT CELL ASTROCYTOMAS IN TSC TO DETERMINE NEW APPROACHES TO TREATMENT, (4) DR. DAVID KWIATKOWSKI (BRIGHAM AND WOMENS HOSPITAL) TO COLLECT AND ANALYZE BIOSAMPLES FROM A NEW EUROPEAN CLINICAL TRIAL TO TREAT OR PREVENT INFANTILE SPASMS IN TSC, (5) DR. GINA LEE (CORNELL UNIVERSITY) TO TEST FOR COMPOUNDS THAT AFFECTING CELLULAR METABOLISM THAT COULD BE USED TO BETTER TREAT TUMORS ASSOCIATED WITH TSC, AND (6) DR. SUE POVEY (UNIVERSITY COLLEGE LONDON) TO CURATE ADDITIONAL MUTATIONS IN TSC1 AND TSC2 GENES AND MAKE THEM OPENLY AVAILABLE TO THE PUBLIC IN A DATABASE THAT IS HIGHLY UTILIZED BY GENETIC RESEARCHERS IN TSC. THE TSC BIOSAMPLE REPOSITORY IS A NEW TS ALLIANCE-DIRECTED PROJECT INITIATED IN 2014 THAT WILL IMPACT RESEARCH OVER THE NEXT TEN YEARS OR MORE. HIGH-QUALITY BIOSAMPLES SUCH AS BLOOD, DNA, AND TISSUES LINKED TO DETAILED CLINICAL DATA ARE REQUIRED FOR RESEARCHERS TO UNDERSTAND WHY TSC IS SO DIFFERENT FROM PERSON TO PERSON. SUCH SAMPLES ARE CURRENTLY UNAVAILABLE, AND THE TS ALLIANCES SCIENCE AND MEDICAL COMMITTEE IDENTIFIED THIS AS A GAP THAT CAN ONLY BE FILLED EFFECTIVELY WITH LEADERSHIP OF THE TS ALLIANCE, GUIDED BY A STEERING COMMITTEE OF CLINICIANS AND RESEARCHERS. THE TS ALLIANCE CONTRACTED WITH THE VAN ANDEL RESEARCH INSTITUTE IN GRAND RAPIDS, MICHIGAN, TO HOST AND DISTRIBUTE BIOSAMPLES. SAMPLES IN THE REPOSITORY WILL BE AVAILABLE TO QUALIFIED RESEARCHERS WORLDWIDE AND WILL BE ASSOCIATED WITH DETAILED CLINICAL DATA, SUCH AS THAT FOUND IN OUR EXISTING TSC NATURAL HISTORY DATABASE. SAMPLE COLLECTION BEGINS IN EARLY 2015.THE TSC CLINICAL RESEARCH CONSORTIUM CONTINUED TO BE A KEY PART OF THE RESEARCH STRATEGY, ALTHOUGH ONLY A SMALL AMOUNT OF TS ALLIANCE FINANCIAL SUPPORT WAS REQUIRED BECAUSE OF THE CONSORTIUMS SUCCESS IN OBTAINING NIH FUNDING. THE FIVE CLINICS COMPRISING THIS CONSORTIUM RECEIVED NIH GRANTS TO CONDUCT TWO CLINICAL STUDIES INITIATED IN 2013. 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 HAS DEVELOPED INFRASTRUCTURE AND PROCESSES TO FORM THE BASIS OF AN ONGOING AND GROWING TSC CLINICAL RESEARCH NETWORK. THE CONSORTIUM RECEIVED A NEW FIVE-YEAR, MULTI-MILLION DOLLAR AWARD FROM NIH TO BE PART OF THE RDCRN DESCRIBED IN THE PRECEDING PARAGRAPH. THE CONSORTIUM SUBMITTED TWO ADDITIONAL NIH GRANT APPLICATIONS THAT, IF FUNDED, WILL ADD TWO ADDITIONAL CLINICAL SITES AND ONE ADDITIONAL PRECLINICAL SITE. THE CONSORTIUM IS ALSO RUNNING A SUB-STUDY OF A LARGER INDUSTRY-SPONSORED PHASE 3 TRIAL. 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 ALLIANCES CHIEF SCIENTIFIC OFFICER IS ON THE LEADERSHIP TEAM OF THE CONSORTIUM. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,281,024 | ExpenseAmt |
| Grant | $23,800 | GrantAmt |
| Revenue | $686,672 | RevenueAmt |
| Desc | 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 2,519 INDIVIDUALS AND FAMILIES DEALING WITH TSC. THE VICE PRESIDENT OF OUTREACH ATTENDED 34 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 2014 THERE WERE THERE ARE 24 EDUCATIONAL LIAISON VOLUNTEERS, WORKING IN 24 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 1,766 FREE PARENT TRAININGS AND WEBINARS ON EDUCATIONAL ADVOCACY OFFERED TO FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. THERE WERE FOUR NEW PUBLICATIONS DEVELOPED FOR THE YOUNG ADULT WEBPAGE: "CHOOSING HEALTH INSURANCE FOR YOUNG ADULTS WITH TSC,"" HEALTH EATING TIPS," AND "HEALTH GROCERY SHOPPING FOR YOUNG ADULTS WITH TSC, AND "FINANCE FOR YOUNG ADULTS WITH TSC WANTING TO LIVE INDEPENDENTLY. THERE WERE 9 ADULT TOPIC CALLS HELD ON TOPICS SPECIFIC TO INDEPENDENT AND SEMI-INDEPENDENT ADULTS WITH TSC. A PILOT DEPENDENT ADULT TRANSITION RESOURCE COORDINATOR PROGRAM WAS DEVELOPED FOR LA. THIS PROGRAM WAS DEVELOPED TO SUPPORT CAREGIVERS OF DEPENDENT ADULTS. THERE WERE 3 DEPENDENT ADULT TOPIC CALLS HELD THIS YEAR TO SUPPORT CAREGIVERS OF DEPENDENT ADULTS. THE ADULT REGIONAL COORDINATOR PROGRAM DEVELOPED TO SUPPORT ADULTS ONE ON ONE SUPPORTED 1,508 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 OTHERS EXPERIENCE. PRESENTLY THE TSC POPULATION THROUGH INSPIRE INCLUDES ALMOST 3,000 MEMBERS FROM 87 COUNTRIES AS OF DECEMBER 31, 2014. IN ADDITION, THE TSC CLINIC AMBASSADORS PROGRAM SUPPORTED 503 INDIVIDUALS AND FAMILIES ONE ON ONE IN TEN TSC CLINICS LOCATED IN MIAMI, FL; CINCINNATI, OH; COLUMBUS, OH; ATLANTA, GA; NASHVILLE, TN; BIRMINGHAM, AL; DENVER, CO, AND DALLAS, TX, AUSTIN TX, AND SALT LAKE CITY UT. THROUGH THE NETWORK OF 34 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, LOCAL EDUCATION AND SUPPORT GROUP MEETINGS ARE HELD THROUGHOUT THE COUNTRY. THE TS ALLIANCE HOSTED 16 EDUCATIONAL MEETINGS AND 40 GATHERINGS HELD AT COMMUNITY ALLIANCE LOCATIONS DURING THE FISCAL YEAR 2014. THESE MEETINGS FACILITATED STRONGER CONNECTIONS WITH PEERS, RESEARCHERS, AND CLINICIANS IN THE COMMUNITY AND EDUCATED THE TSC COMMUNITY ABOUT CLINICAL TRIALS, RESEARCH AND TREATMENT OPTIONS FOR THOSE LIVING WITH TSC. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $284,172 | ExpenseAmt |
| Desc | 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 2014, THE TS ALLIANCE PRODUCED THREE ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO ALMOST 15,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCES WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION VIA 1 MILLION-PLUS HITS MONTHLY FROM AN AVERAGE OF MORE THAN 37,500 UNIQUE VISITORS. THE TS ALLIANCE ALSO RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS FACEBOOK GROUP BOASTS MORE THAN 6,398 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 1,100-PLUS FOLLOWERS. THE TS ALLIANCE ALSO PROVIDED PUBLIC EDUCATION THROUGH THE 2014 WORLD TSC CONFERENCE, WHICH ATTRACTED 690 PARTICIPANTS, FROM 44 STATES AND 20 COUNTRIES, DURING THE THREE-DAY EVENT. THIRTY-FOUR OF THE FORTY-EIGHT EDUCATIONAL SESSIONS WERE VIDEOTAPED AND UPLOADED TO THE TS ALLIANCE YOUTUBE CHANNEL FOR ANYONE TO VIEW AFTER THE CONFERENCE; THESE RECORDINGS HAVE GARNERED 3,035 VIEWS.TO INCREASE PUBLIC AWARENESS, THE TS ALLIANCE HEAVILY PROMOTED TSC GLOBAL AWARENESS DAY ON MAY 15. THIS YEARS EVENT INCLUDED A DEDICATED WEBSITE, TSCGLOBALDAY.ORG, TO HOUSE A "WORLD OF THANKS" SOCIAL MEDIA/PHOTO CAMPAIGN WHICH GARNERED 160 PICTURES FROM 24 COUNTRIES AS WELL AS A HUGE FACEBOOK/TWITTER PUSH. IN ADDITION, THE TS ALLIANCE PRESIDENT & CEO, ITS CHIEF SCIENTIFIC OFFICER AND DR. KEVIN ESS PARTICIPATED IN 9 RADIO INTERVIEWS, WHICH ULTIMATELY AIRED ON 1,764 TIMES REACHING MORE THAN 10.4 MILLION LISTENERS. TO HELP EDUCATE PHYSICIANS, THE TS ALLIANCE UPDATED ITS "DIAGNOSIS, SURVEILLANCE AND MANAGEMENT OF INDIVIDUALS WITH TSC" PUBLICATION TO REFLECT CURRENT STANDARDS. THE ORGANIZATION ALSO PRODUCED AN EDUCATIONAL VIDEO FOCUSED ON GOVERNMENT ADVOCACY. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (2 entries)
| ExpenseExpenseAmt | DescDesc |
|---|---|
| $178,975 | GOVERNMENT RELATIONS FOCUSES ON EDUCATING MEMBERS OF CONGRESS ABOUT TSC TO FURTHER TSC RESEARCH, AWARENESS AND CLINICAL CARE. THE ANNUAL TS ALLIANCE MARCH ON CAPITOL HILL TO ADVOCATE FOR FEDERAL FUNDING FOR THE TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM (TSCRP) AT THE DEPARTMENT OF DEFENSES (DOD) CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) TOOK PLACE IN EARLY MARCH 2014. MORE THAN 80 MEMBERS OF THE TSC COMMUNITY PARTICIPATED, ASKING THEIR SENATORS AND REPRESENTATIVES TO SIGN ONTO DEAR COLLEAGUE LETTERS IN SUPPORT OF TSC RESEARCH. IN THE HOUSE, 25% OR 110 DEMOCRATIC AND REPUBLICAN REPRESENTATIVES SIGNED ONTO A BIPARTISAN DEAR COLLEAGUE LETTER OF SUPPORT FROM REPRESENTATIVES LORETTA SANCHEZ (D-CA) AND MIKE FITZPATRICK (R-PA). THE NUMBER OF SIGNATURES SECURED FOR THE SANCHEZ-FITZPATRICK LETTER GREATLY EXCEEDS THE NUMBERS SET IN PREVIOUS YEARS. THE SENATE LETTER WAS SPONSORED BY SENATORS CHRIS MURPHY (D-CT) AND JOHNNY ISAKSON (R-GA) AND INCLUDED 17 SIGNATURES. IN FY2015, THE TSC RESEARCH PROGRAM AT THE CDMRP RECEIVED A $6 MILLION APPROPRIATION, BRINGING THE CUMULATIVE FUNDING TO $59 MILLION SINCE 2002 AS A RESULT OF OUR SUCCESSFUL GRASSROOTS EFFORTS. RESEARCH DONE THROUGH THIS PROGRAM HAS RECENTLY LED TO ADDITIONAL CLINICAL TRIALS INCLUDING; DETERMINING IF IMATINIB, A DRUG FDA-APPROVED FOR CANCER, CAN SAFELY IMPROVE LEVELS OF VEGF-D, A BIOMARKER OF LYMPHANGIOLEIOMYOMATOSIS (LAM), A LIFE-THREATENING LUNG MANIFESTATION OF TSC, FUNDED IN FY2013 (THE MOST RECENT YEAR FOR WHICH AWARDS HAVE BEEN ANNOUNCED); TESTING A COMBINATION OF TWO DRUGS TO TREAT LAM 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 AN INDUSTRY-SPONSORED 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, 2014. CONGRESSIONAL STAFF AND KEY MEMBERS OF THE TSC RESEARCH AND GRASSROOTS COMMUNITIES ATTENDED THE EVENT. |
| $38,343 | 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 ADDITIONAL PEER-REVIEWED ARTICLES TO MAKE AVAILABLE TO HEALTHCARE PROVIDERS WORLDWIDE THE LATEST RECOMMENDATIONS ON THE SURVEILLANCE AND MANAGEMENT OF CARDIAC AND NEUROPSYCHIATRIC ASPECTS OF TSC ARISING 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 REACHED 3,084 HEALTHCARE PROVIDERS TO EDUCATE THEM ON THE PUBLISHED CONSENSUS RECOMMENDATIONS. ADDITIONALLY, THE TS ALLIANCE WORKED WITH OTHER ADVOCACY GROUPS REPRESENTING RARE EPILEPSY SYNDROMES TO FURTHER IMPLEMENT RECOMMENDATIONS FROM AN INSTITUTE OF MEDICINE (IOM) REPORT ON THE EPILEPSIES, INCLUDING HELPING BUILD AN ONLINE PORTAL WHERE EPILEPSY RESEARCHERS CAN IN REAL-TIME SEARCH FOR FUNDING OPPORTUNITIES AVAILABLE FROM NON-PROFIT ORGANIZATIONS. THE TS ALLIANCE ALSO JOINED FORCES WITH OTHER NON-PROFIT ORGANIZATIONS COMMITTED TO EPILEPSY RESEARCH TO CREATE THE EPILEPSY LEADERSHIP COUNCIL, AN ALLIANCE THAT WILL CONTINUE TO KEEP THE FOCUS ON PATIENT-CENTERED RESEARCH AND EDUCATIONAL INITIATIVES RECOMMENDED BY THE IOM REPORT.THE TS ALLIANCE PARTICIPATED IN AND PRESENTED AT SEVERAL PROFESSIONAL MEETINGS INCLUDING: LAM FOUNDATION CONFERENCE; A LAM BIOMARKER SUMMIT; THE INTERNATIONAL RESEARCH CONFERENCE ON TSC AND LAM IN BEIJING, CHINA; CONGRESSIONAL SHOWCASE WITH THE COALITION FOR IMAGING AND BIOENGINNERING RESEARCH (CIBR); IPHARMA CONFERENCE; ASSOCIATION OF CLINICAL RESEARCH PROFESSIONALS CONFERENCE; INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE); RARE DISEASE DAY AT NIH; THE NINDS NONPROFIT FORUM; NORD/DIA ANNUAL CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS; PARTNERS AGAINST MORTALITY IN EPILEPSY (PAME) CONFERENCE; AND PARTNERING FOR CURES. 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 VICE PRESIDENT OF OUTREACH 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 ONE KEY TO INDIVIDUALS HAVING A GOOD QUALITY OF LIFE. |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $217,318 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $3,290,652 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Temp Or Permanent Endowments | Yes (1) | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | Yes (1) | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | Yes (1) | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | 0 | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | 0 | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 36 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 20 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 24 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 24 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | Yes (1) | MembersOrStockholdersInd |
| Election Of Board Members | Yes (1) | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | DC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ND | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AZ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ME | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | LA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TX | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | DE | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ID | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IA | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE ORGANIZATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD NO 750 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (27 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Key EmployeeKeyEmployeeInd |
|---|---|---|---|---|---|---|---|---|
| KEITH HALL | ||||||||
| CHAIR | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| LAURA LUBBERS | ||||||||
| VICE CHAIR | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| MATT BOLGER | ||||||||
| IMMEDIATE PAST CHAIR | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| DAVID MICHAELS | ||||||||
| TREASURER | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | 1.00 | |
| DAVID FITZMAURICE | ||||||||
| SECRETARY | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| HENRY SHAPIRO | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| REIKO DONATO | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| MARTINA BEBIN | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| DAVID PARKES | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| CELIA MASTBAUM | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| JULIE BLUM | ||||||||
| BOARD MEMBER | 3.00 | Yes (X) | $0 | $0 | $0 | |||
| RITA DIDOMENICO | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | 2.00 | ||
| JOHN BISSLER MD | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| STEVEN GOLDSTEIN | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | 1.00 | ||
| LINDA JACKSON | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| DARREN MILES | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| BRENDAN MANNING PHD | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| DEBORA MORITZ | ||||||||
| BOARD MEMBER | 5.00 | Yes (X) | $0 | $0 | $0 | |||
| THEODORE MASTROIANNI | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| COURTNEY O'MALLEY | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| JOHN NICHOLSON JR MD | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| REBECCA ANHANG PRICE | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| JUDITH SHOULAK | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| ELIZABETH THIELE MD PHD | ||||||||
| BOARD MEMBER | 2.00 | Yes (X) | $0 | $0 | $0 | |||
| KARI L ROSBECK | ||||||||
| PRESIDENT & CEO | 50.00 | Yes (X) | $149,894 | $14,989 | $37,209 | 5.00 | ||
| MARY JANE PERRAUT | ||||||||
| CHIEF FINANCIAL OFFICER | 40.00 | Yes (X) | $114,746 | $14,343 | $29,989 | 5.00 | ||
| STEVEN L ROBERDS | ||||||||
| CHIEF SCIENTIFIC OFFICER | 45.00 | $177,610 | $0 | $30,064 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $442,250 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $29,332 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $97,262 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 3 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $76,776 | FederatedCampaignsAmt |
| Fundraising | $1,441,630 | FundraisingAmt |
| Related Organizations | $97,500 | RelatedOrganizationsAmt |
| All Other Contributions | $1,508,480 | AllOtherContributionsAmt |
| Noncash Contributions | $4,826 | NoncashContributionsAmt |
| Total Contributions | $3,124,386 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| CONFERENCE REVENUE | 900099 | $686,672 | $686,672 |
| CONTRACT REVENUE | 900099 | $550,887 | $550,887 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $1,237,559 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $13,455 | TotalRevenueColumnAmt |
| Exclusion | $13,455 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $49,148 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $51,949 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -$2,801 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$2,801 | TotalRevenueColumnAmt |
| Exclusion | -$2,801 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $198,218 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,441,630 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $201,221 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$3,003 | TotalRevenueColumnAmt |
| Exclusion | -$3,003 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | OTHER | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $9,351 | TotalRevenueColumnAmt |
| Exclusion | $9,351 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $9,351 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $4,378,947 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,237,559 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $17,002 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $426,520 | TotalAmt |
| Program Services | $426,520 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $31,000 | TotalAmt |
| Program Services | $31,000 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $583,030 | TotalAmt |
| Program Services | $364,214 | ProgramServicesAmt |
| Management And General | $70,187 | ManagementAndGeneralAmt |
| Fundraising | $148,629 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $749,407 | TotalAmt |
| Program Services | $469,154 | ProgramServicesAmt |
| Management And General | $90,140 | ManagementAndGeneralAmt |
| Fundraising | $190,113 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,386 | TotalAmt |
| Program Services | $13,238 | ProgramServicesAmt |
| Management And General | $2,584 | ManagementAndGeneralAmt |
| Fundraising | $5,564 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $86,986 | TotalAmt |
| Program Services | $53,845 | ProgramServicesAmt |
| Management And General | $10,509 | ManagementAndGeneralAmt |
| Fundraising | $22,632 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $89,135 | TotalAmt |
| Program Services | $55,175 | ProgramServicesAmt |
| Management And General | $10,769 | ManagementAndGeneralAmt |
| Fundraising | $23,191 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,528 | TotalAmt |
| Program Services | $10,400 | ProgramServicesAmt |
| Management And General | $11,128 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $29,740 | TotalAmt |
| Program Services | $20,979 | ProgramServicesAmt |
| Management And General | $4,289 | ManagementAndGeneralAmt |
| Fundraising | $4,472 | FundraisingAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $103,319 | TotalAmt |
| Program Services | $103,319 | ProgramServicesAmt |
Fees For Services Prof Fundraising FeesForServicesProfFundraising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,500 | TotalAmt |
| Fundraising | $16,500 | FundraisingAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $122,117 | TotalAmt |
| Program Services | $85,165 | ProgramServicesAmt |
| Management And General | $25,278 | ManagementAndGeneralAmt |
| Fundraising | $11,674 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $259,887 | TotalAmt |
| Program Services | $111,177 | ProgramServicesAmt |
| Management And General | $61,617 | ManagementAndGeneralAmt |
| Fundraising | $87,093 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $104,823 | TotalAmt |
| Program Services | $14,771 | ProgramServicesAmt |
| Management And General | $89,952 | ManagementAndGeneralAmt |
| Fundraising | $100 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $81,561 | TotalAmt |
| Program Services | $239 | ProgramServicesAmt |
| Management And General | $81,082 | ManagementAndGeneralAmt |
| Fundraising | $240 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $172,228 | TotalAmt |
| Program Services | $115,598 | ProgramServicesAmt |
| Management And General | $10,116 | ManagementAndGeneralAmt |
| Fundraising | $46,514 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $77,720 | TotalAmt |
| Program Services | $45,269 | ProgramServicesAmt |
| Management And General | $28,319 | ManagementAndGeneralAmt |
| Fundraising | $4,132 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $47,368 | TotalAmt |
| Program Services | $3,213 | ProgramServicesAmt |
| Management And General | $44,155 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,852 | TotalAmt |
| Management And General | $7,852 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | FundraisingFundraisingAmt | Management And GeneralManagementAndGeneralAmt |
|---|---|---|---|---|
| WORLD CONFERENCE | $610,103 | $609,504 | $599 | |
| NATURAL HISTORY DATABAS | $487,708 | $487,708 | ||
| BANK AND CREDIT CARD FE | $57,445 | $290 | $20,652 | $36,503 |
| CLINICAL RESEARCH NETWO | $53,068 | $53,068 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $31,330 | TotalAmt |
| Program Services | $216,806 | ProgramServicesAmt |
| Management And General | -$272,861 | ManagementAndGeneralAmt |
| Fundraising | $87,385 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,271,761 | TotalAmt |
| Program Services | $3,290,652 | ProgramServicesAmt |
| Management And General | $311,619 | ManagementAndGeneralAmt |
| Fundraising | $669,490 | FundraisingAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Joint Costs | Yes (X) | JointCostsInd |
Total Joint Costs TotalJointCostsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $106,582 | TotalAmt |
| Program Services | $53,291 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $53,291 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,054,646 | BOYAmt |
| EOY | $2,333,085 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $248,045 | BOYAmt |
| EOY | $590,177 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $162,675 | BOYAmt |
| EOY | $417,226 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $326,326 | BOYAmt |
| EOY | $274,463 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $181,502 | BOYAmt |
| EOY | $75,260 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $279,219 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $93,332 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $203,501 | BOYAmt |
| EOY | $185,887 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,995,018 | BOYAmt |
| EOY | $5,057,341 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,171,713 | BOYAmt |
| EOY | $8,933,439 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $230,387 | BOYAmt |
| EOY | $299,920 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $494,483 | BOYAmt |
| EOY | $12,973 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $724,870 | BOYAmt |
| EOY | $312,893 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,953,119 | BOYAmt |
| EOY | $6,117,155 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,614,280 | BOYAmt |
| EOY | $1,623,947 | EOYAmt |
Permanently Rstr Net Assets PermanentlyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $879,444 | BOYAmt |
| EOY | $879,444 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,446,843 | BOYAmt |
| EOY | $8,620,546 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,171,713 | BOYAmt |
| EOY | $8,933,439 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | $107,186 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$16 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $66,533 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,449,542 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,812,563 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,199,643 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,239,048 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,124,386 | CurrentTaxYearAmt |
| Total | $14,825,182 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,449,542 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,812,563 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,199,643 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,239,048 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,124,386 | CurrentTaxYearAmt |
| Total | $14,825,182 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,755,592 | SubstantialContributorsTotAmt |
| Public Support Total170 | $13,069,590 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $7,821 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $9,722 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,794 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $13,335 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $13,455 | CurrentTaxYearAmt |
| Total | $54,127 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $5,728 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $13,037 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $23,048 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,984 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $9,351 | CurrentTaxYearAmt |
| Total | $57,148 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $14,936,457 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $2,698,294 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.87500 | PublicSupportCY170Pct |
| Public Support PY170 | 0.89620 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: | FormAndLineReferenceDesc |
| Explanation | INCOME FROM OTHER PROGRAM RELATED ACTIVITIES - 2010 AMOUNT: $ 5,728. 2011 AMOUNT: $ 13,037. 2012 AMOUNT: $ 23,048. 2013 AMOUNT: $ 5,984. 2014 AMOUNT: $ 9,351. | ExplanationTxt |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $905 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $178,070 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $178,975 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,076,955 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,255,930 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $362,797 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $90,699 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $334,138 | CurrentYearMinus3Amt |
| Current Year Minus2 | $323,610 | CurrentYearMinus2Amt |
| Current Year Minus1 | $354,161 | CurrentYearMinus1Amt |
| Current Year | $362,797 | CurrentYearAmt |
| Total | $1,374,706 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $2,062,059 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $163,120 | CurrentYearMinus3Amt |
| Current Year Minus2 | $141,410 | CurrentYearMinus2Amt |
| Current Year Minus1 | $142,520 | CurrentYearMinus1Amt |
| Current Year | $178,975 | CurrentYearAmt |
| Total | $626,025 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $83,535 | CurrentYearMinus3Amt |
| Current Year Minus2 | $80,903 | CurrentYearMinus2Amt |
| Current Year Minus1 | $88,540 | CurrentYearMinus1Amt |
| Current Year | $90,699 | CurrentYearAmt |
| Total | $343,677 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $515,516 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $7,688 | CurrentYearMinus3Amt |
| Current Year Minus2 | $16,179 | CurrentYearMinus2Amt |
| Current Year Minus1 | $919 | CurrentYearMinus1Amt |
| Current Year | $905 | CurrentYearAmt |
| Total | $25,691 | TotalAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $4,994,766 | BeginningYearBalanceAmt |
| Contributions | $47,153 | ContributionsAmt |
| Investment Earnings Or Losses | $179,553 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $97,500 | OtherExpendituresAmt |
| Administrative Expenses | $62,673 | AdministrativeExpensesAmt |
| End Year Balance | $5,061,299 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $4,457,365 | BeginningYearBalanceAmt |
| Contributions | $42,690 | ContributionsAmt |
| Investment Earnings Or Losses | $718,381 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $197,200 | OtherExpendituresAmt |
| Administrative Expenses | $26,470 | AdministrativeExpensesAmt |
| End Year Balance | $4,994,766 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $4,221,150 | BeginningYearBalanceAmt |
| Contributions | $43,996 | ContributionsAmt |
| Investment Earnings Or Losses | $420,983 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $202,000 | OtherExpendituresAmt |
| Administrative Expenses | $26,764 | AdministrativeExpensesAmt |
| End Year Balance | $4,457,365 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $4,443,045 | BeginningYearBalanceAmt |
| Contributions | $29,825 | ContributionsAmt |
| Investment Earnings Or Losses | -$47,583 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $175,000 | OtherExpendituresAmt |
| Administrative Expenses | $29,137 | AdministrativeExpensesAmt |
| End Year Balance | $4,221,150 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $3,866,081 | BeginningYearBalanceAmt |
| Contributions | $13,835 | ContributionsAmt |
| Investment Earnings Or Losses | $584,775 | InvestmentEarningsOrLossesAmt |
| Administrative Expenses | $21,646 | AdministrativeExpensesAmt |
| End Year Balance | $4,443,045 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 0.81970 | BoardDesignatedBalanceEOYPct |
| Prmnnt Endowment Balance EOY | 0.17380 | PrmnntEndowmentBalanceEOYPct |
| Term Endowment Balance EOY | 0.00650 | TermEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | Yes (1) | EndowmentsHeldRelatedOrgInd |
| Related Org List Sch R | Yes (1) | RelatedOrgListSchRInd |
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $156,545 | OtherCostOrOtherBasisAmt |
| Depreciation | $39,666 | DepreciationAmt |
| Book Value | $116,879 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $14,829 | OtherCostOrOtherBasisAmt |
| Depreciation | $10,812 | DepreciationAmt |
| Book Value | $4,017 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $107,845 | OtherCostOrOtherBasisAmt |
| Depreciation | $42,854 | DepreciationAmt |
| Book Value | $64,991 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $185,887 | TotalBookValueLandBuildingsAmt |
Other Assets Org OtherAssetsOrgGrp (2 entries)
| DescDesc | Book ValueBookValueAmt |
|---|---|
| INTEREST IN NET ASSETS OF AFFILIATE | $5,061,299 |
| DUE FROM AFFILIATE | -$3,958 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | $5,057,341 | TotalBookValueOtherAssetsAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $4,472,650 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$16 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $27,186 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $66,533 | OtherRevenueAmt |
| Revenue Not Reported | $93,703 | RevenueNotReportedAmt |
| Revenue Subtotal | $4,378,947 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $4,378,947 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $4,298,947 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $27,186 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $27,186 | ExpensesNotReportedAmt |
| Expenses Subtotal | $4,271,761 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $4,271,761 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | CHANGE IN INTEREST IN AFFILIATE 66,533. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE | RegionTxt |
| Offices | 0 | OfficesCnt |
| Employee | 0 | EmployeeCnt |
| Type Of Activities Conducted | GRANTS TO RECIPIENTS | TypeOfActivitiesConductedTxt |
| Specific Services Provided | RESEARCH AWARDS | SpecificServicesProvidedTxt |
| Region Total Expenditures | $31,000 | RegionTotalExpendituresAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continutation Total Office | 0 | ContinutationTotalOfficeCnt |
| Continutation Total Employee | 0 | ContinutationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $31,000 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $31,000 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE | RegionTxt |
| Purpose Of Grant | RESEARCH GRANT | PurposeOfGrantTxt |
| Cash Grant | $31,000 | CashGrantAmt |
| Manner Of Cash Disbursement | CHECK | MannerOfCashDisbursementTxt |
| Valuation Method Used | CASH | ValuationMethodUsedDesc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 0 | Total501c3OrgCnt |
| Total Other Org | 1 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | 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. | ExplanationTxt |
Schedule G IRS990ScheduleG
| Field | Value | IRS element (for citing) |
|---|---|---|
| Special Fundraising Events | Yes (X) | SpecialFundraisingEventsInd |
| Agrmt Prof Fundraising Acty | Yes (1) | AgrmtProfFundraisingActyInd |
Fundraiser Activity Info FundraiserActivityInfoGrp
Organization Business Name OrganizationBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | BLUE ROOM EVENTS INC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 5777 WEST CENTURY BLVD STE 880 | AddressLine1Txt |
| City | LOS ANGELES | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 90045 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Activity | COMEDY FOR A CURE EVENT | ActivityTxt |
| Fundraiser Control Of Funds | 0 | FundraiserControlOfFundsInd |
| Gross Receipts | $206,410 | GrossReceiptsAmt |
| Retained By Contractor | $16,500 | RetainedByContractorAmt |
| Net To Organization | $189,910 | NetToOrganizationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Gross Receipts | $206,410 | TotalGrossReceiptsAmt |
| Total Retained By Contractors | $16,500 | TotalRetainedByContractorsAmt |
| Total Net To Organization | $189,910 | TotalNetToOrganizationAmt |
| Licensed States | MD | LicensedStatesCd |
| Licensed States | CA | LicensedStatesCd |
| Licensed States | DC | LicensedStatesCd |
| Licensed States | ND | LicensedStatesCd |
| Licensed States | AK | LicensedStatesCd |
| Licensed States | AZ | LicensedStatesCd |
| Licensed States | RI | LicensedStatesCd |
| Licensed States | PA | LicensedStatesCd |
| Licensed States | CO | LicensedStatesCd |
| Licensed States | MA | LicensedStatesCd |
| Licensed States | NH | LicensedStatesCd |
| Licensed States | NY | LicensedStatesCd |
| Licensed States | NC | LicensedStatesCd |
| Licensed States | OH | LicensedStatesCd |
| Licensed States | OR | LicensedStatesCd |
| Licensed States | VA | LicensedStatesCd |
| Licensed States | CT | LicensedStatesCd |
| Licensed States | ME | LicensedStatesCd |
| Licensed States | GA | LicensedStatesCd |
| Licensed States | NV | LicensedStatesCd |
| Licensed States | AR | LicensedStatesCd |
| Licensed States | HI | LicensedStatesCd |
| Licensed States | IL | LicensedStatesCd |
| Licensed States | KS | LicensedStatesCd |
| Licensed States | KY | LicensedStatesCd |
| Licensed States | TN | LicensedStatesCd |
| Licensed States | MI | LicensedStatesCd |
| Licensed States | NJ | LicensedStatesCd |
| Licensed States | NM | LicensedStatesCd |
| Licensed States | UT | LicensedStatesCd |
| Licensed States | MN | LicensedStatesCd |
| Licensed States | WV | LicensedStatesCd |
| Licensed States | OK | LicensedStatesCd |
| Licensed States | WY | LicensedStatesCd |
| Licensed States | FL | LicensedStatesCd |
| Licensed States | AL | LicensedStatesCd |
| Licensed States | WA | LicensedStatesCd |
| Licensed States | SC | LicensedStatesCd |
| Licensed States | WI | LicensedStatesCd |
| Licensed States | MS | LicensedStatesCd |
| Licensed States | LA | LicensedStatesCd |
| Licensed States | TX | LicensedStatesCd |
| Licensed States | MO | LicensedStatesCd |
| Licensed States | DE | LicensedStatesCd |
| Licensed States | ID | LicensedStatesCd |
| Licensed States | IN | LicensedStatesCd |
| Licensed States | IA | LicensedStatesCd |
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | WALKS | Event1Nm |
| Gross Receipts Event1 | $1,046,964 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,046,964 | CharitableContriEvent1Amt |
| Other Direct Expenses Event1 | $48,946 | OtherDirectExpensesEvent1Amt |
| Event2 | NY 40TH CELEBRATION | Event2Nm |
| Gross Receipts Event2 | $267,673 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $143,687 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $123,986 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $90,630 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 2 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $325,211 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $250,979 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $74,232 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $61,645 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $1,639,848 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,441,630 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $198,218 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $201,221 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $201,221 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$3,003 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (7 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|
| BRIGHAM & WOMEN'S HOSPITAL | |||||||
| 75 FRANCIS STREET | BOSTON | MA | 02115 | 042312909 | 501(C)(3) | $72,484 | RESEARCH GRANT |
| VANDERBILT UNIVERSITY MEDICAL CENTER | |||||||
| DEPT OF FINANCE DEPT AT 40303 | ATLANTA | GA | 31192 | 620476822 | 501(C)(3) | $65,755 | RESEARCH GRANT |
| CHILDREN'S HOSPITAL LOS ANGELES | |||||||
| 4650 SUNSET BLVD MAIL STOP 97 | LOS ANGELES | CA | 900276062 | 956121916 | 501(C)(3) | $18,750 | RESEARCH GRANT |
| CORNELL UNIVERSITY | |||||||
| 575 LEXINGTON AVE 9TH FL | NEW YORK | NY | 10022 | 131623978 | 501(C)(3) | $8,016 | POSTDOCTORAL FELLOWSHIP AWARD |
| RUTGERS UNIVERSITY | |||||||
| 3 RUTGERS PLAZA | NEW BRUNSWICK | NJ | 08901 | 226001086 | 501(C)(3) | $75,000 | RESEARCH GRANT |
| HARVARD UNIVERSITY | |||||||
| PO BOX 415649 | BOSTON | MA | 022415649 | 042103580 | 501(C)(3) | $109,734 | POSTDOCTORAL FELLOWSHIP AWARD |
| YALE UNIVERSITY | |||||||
| PO BOX 1873 | NEW HAVEN | CT | 065081873 | 060646973 | 501(C)(3) | $18,750 | RESEARCH GRANT |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 7 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 2: | THE TS ALLIANCE HAS FUNDED MORE THAN $18 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: - POSTDOCTORAL & CLINICAL FELLOWSHIPS - 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 J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| Written Employment Contract | Yes (X) | WrittenEmploymentContractInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | Yes (1) | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | Yes (1) | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (3 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| KARI L ROSBECK | ||||||||||||||
| PRESIDENT & CEO | $137,954 | $13,497 | $11,940 | $1,492 | $0 | $0 | $4,700 | $470 | $31,351 | $3,135 | $185,945 | $18,594 | $0 | $0 |
| MARY JANE PERRAUT | ||||||||||||||
| CHIEF FINANCIAL OFFICER | $104,824 | $13,103 | $9,922 | $1,240 | $0 | $0 | $3,525 | $441 | $20,281 | $2,535 | $138,552 | $17,319 | $0 | $0 |
| STEVEN L ROBERDS | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $163,249 | $0 | $14,361 | $0 | $0 | $0 | $5,343 | $0 | $39,668 | $0 | $222,621 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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. |
| PART I, LINE 6 | KARI LUTHER ROSBECK, PRESIDENT AND CEO, MARY JANE PERRAUT, CFO, AND STEVE ROBERDS, CSO, ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES 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 O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (8 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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 2014: THE FOLLOWING CONFLICTS OF INTEREST WERE DISCLOSED: BOARD MEMBER ELIZABETH THIELE, MD, PHD, IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL, WHICH RECEIVED A $31,500 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 66,533. |
| FORM 990, PART XI, LINE 2C | THE AUDIT REVIEW PROCESS HAS REMAIN UNCHANGED FROM THE PRIOR YEAR. |
Schedule R IRS990ScheduleR
Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD 750 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 521926919 | EIN |
| Primary Activities | TO RECEIVE GIFTS THAT WILL BE INVESTED TO GENERATE INCOME FOR TSA | PrimaryActivitiesTxt |
| Legal Domicile State | MD | LegalDomicileStateCd |
| Exempt Code Section | 501(C)(3) | ExemptCodeSectionTxt |
| Public Charity Status | LINE 11B, II | PublicCharityStatusTxt |
Direct Controlling Entity Name DirectControllingEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL TUBEROUS SCLEROSIS ASSOCIATION (TSA) | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Controlled Organization | 0 | ControlledOrganizationInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | 0 | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | Yes (1) | GiftGrntCapContriFromOthOrgInd |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrgInd |
| Loans Or Guarantees From Oth Org | 0 | LoansOrGuaranteesFromOthOrgInd |
| Div Related Organization | 0 | DivRelatedOrganizationInd |
| Asset Sale To Other Org | 0 | AssetSaleToOtherOrgInd |
| Asset Purchase From Other Org | 0 | AssetPurchaseFromOtherOrgInd |
| Asset Exchange | 0 | AssetExchangeInd |
| Rental Of Facilities To Oth Org | 0 | RentalOfFacilitiesToOthOrgInd |
| Rental Of Fclts From Oth Org | 0 | RentalOfFcltsFromOthOrgInd |
| Perform Of Services For Oth Org | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | Yes (1) | SharingOfFacilitiesInd |
| Paid Employees Sharing | Yes (1) | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |
Transactions Related Org TransactionsRelatedOrgGrp
Other Organization Name OtherOrganizationName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transaction Type | C | TransactionTypeTxt |
| Involved | $97,500 | InvolvedAmt |
| Method Of Amount Determination | CASH | MethodOfAmountDeterminationTxt |
Comments