NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2012
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
- Tax period
- 2012-01-01 to 2012-12-31
- Filed
- 2013-04-22
- IRS object ID
- 201301129349300205
- Schema version
- 2012v2.1
- 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 L
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Timestamp | 2013-04-22T10:14:55-05:00 | Timestamp |
| Tax Period End Date | 2012-12-31 | TaxPeriodEndDate |
Preparer Firm PreparerFirm
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 521855942 | EIN |
Preparer Firm Business Name PreparerFirmBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TATE & TRYON | BusinessNameLine1 |
Preparer Firm US Address PreparerFirmUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2021 L STREET NW | AddressLine1 |
| City | WASHINGTON | City |
| State | DC | State |
| ZIP Code | 20036 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnType |
| Tax Period Begin Date | 2012-01-01 | TaxPeriodBeginDate |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 953018799 | EIN |
Name Name
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Control | NATI | NameControl |
| Phone | 3015629890 | Phone |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD NO 750 | AddressLine1 |
| City | SILVER SPRING | City |
| State | MD | State |
| ZIP Code | 20910 | ZIPCode |
Officer Officer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | KARI L ROSBECK | Name |
| Title | PRESIDENT AND CEO | Title |
| Phone | 3015629890 | Phone |
| Date Signed | 2013-04-22 | DateSigned |
| Authorize Third Party | 1 | AuthorizeThirdParty |
Preparer Preparer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | SUBRINA L WOOD | Name |
| PTIN | P00365899 | PTIN |
| Phone | 2022932200 | Phone |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax Year | 2012 | TaxYear |
| Build TS | 2016-03-07 17:11:31Z | BuildTS |
Form 990 IRS990
Doing Business As DoingBusinessAs
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS ALLIANCE | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Principal Officer Person | KARI L ROSBECK | NameOfPrincipalOfficerPerson |
Address Principal Officer US AddressPrincipalOfficerUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD NO 750 | AddressLine1 |
| City | SILVER SPRING | City |
| State | MD | State |
| ZIP Code | 20910 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | 3454243 | GrossReceipts |
| Group Return For Affiliates | 0 | GroupReturnForAffiliates |
| Organization501c3 | X | Organization501c3 |
| Web Site | WWW.TSALLIANCE.ORG | WebSite |
| Type Of Organization Corporation | X | TypeOfOrganizationCorporation |
| Year Formation | 1975 | YearFormation |
| State Legal Domicile | CA | StateLegalDomicile |
| Activity Or Mission Description | THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION DBA TUBEROUS SCLEROSIS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS WHILE IMPROVING THE LIVES OF THOSE AFFECTED. | ActivityOrMissionDescription |
| Nbr Voting Members Governing Body | 26 | NbrVotingMembersGoverningBody |
| Nbr Independent Voting Members | 25 | NbrIndependentVotingMembers |
| Total Nbr Employees | 16 | TotalNbrEmployees |
| Total Nbr Volunteers | 2000 | TotalNbrVolunteers |
| Total Gross UBI | 0 | TotalGrossUBI |
| Net Unrelated Business Txbl Income | 0 | NetUnrelatedBusinessTxblIncome |
| Contributions Grants Prior Year | 3875096 | ContributionsGrantsPriorYear |
| Contributions Grants Current Year | 3199643 | ContributionsGrantsCurrentYear |
| Program Service Revenue Prior Year | 212084 | ProgramServiceRevenuePriorYear |
| Program Service Revenue CY | 202786 | ProgramServiceRevenueCY |
| Investment Income Prior Year | 9439 | InvestmentIncomePriorYear |
| Investment Income Current Year | 9669 | InvestmentIncomeCurrentYear |
| Other Revenue Prior Year | -131202 | OtherRevenuePriorYear |
| Other Revenue Current Year | -67798 | OtherRevenueCurrentYear |
| Total Revenue Prior Year | 3965417 | TotalRevenuePriorYear |
| Total Revenue Current Year | 3344300 | TotalRevenueCurrentYear |
| Grants And Similar Amnts Prior Year | 1174276 | GrantsAndSimilarAmntsPriorYear |
| Grants And Similar Amnts CY | 839957 | GrantsAndSimilarAmntsCY |
| Benefits Paid To Members Prior Year | 0 | BenefitsPaidToMembersPriorYear |
| Benefits Paid To Members CY | 0 | BenefitsPaidToMembersCY |
| Salaries Etc Prior Year | 1122866 | SalariesEtcPriorYear |
| Salaries Etc Current Year | 1253071 | SalariesEtcCurrentYear |
| Total Prof Fundrsng Exp Prior Year | 16500 | TotalProfFundrsngExpPriorYear |
| Total Prof Fundrsng Exp CY | 16500 | TotalProfFundrsngExpCY |
| Total Fundrsng Exp Current Year | 543550 | TotalFundrsngExpCurrentYear |
| Other Expense Prior Year | 1320882 | OtherExpensePriorYear |
| Other Expenses Current Year | 1379176 | OtherExpensesCurrentYear |
| Total Expenses Prior Year | 3634524 | TotalExpensesPriorYear |
| Total Expenses Current Year | 3488704 | TotalExpensesCurrentYear |
| Revenues Less Expenses Prior Year | 330893 | RevenuesLessExpensesPriorYear |
| Revenues Less Expenses CY | -144404 | RevenuesLessExpensesCY |
| Total Assets BOY | 7974678 | TotalAssetsBOY |
| Total Assets EOY | 7963191 | TotalAssetsEOY |
| Total Liabilities BOY | 222313 | TotalLiabilitiesBOY |
| Total Liabilities EOY | 119036 | TotalLiabilitiesEOY |
| Net Assets Or Fund Balances BOY | 7752365 | NetAssetsOrFundBalancesBOY |
| Net Assets Or Fund Balances EOY | 7844155 | NetAssetsOrFundBalancesEOY |
| Info In Schedule O Part III | X | InfoInScheduleOPartIII |
| Mission Description | THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THE AFFECTED. | MissionDescription |
| Significant New Program Services | 0 | SignificantNewProgramServices |
| Significant Change | 0 | SignificantChange |
| Expense | 1046940 | Expense |
| Grants | 839957 | Grants |
| Revenue | 202286 | Revenue |
| Description | 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 $16.5 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 GRANT REVIEW 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 IDENTIFIES SPECIFIC CORRELATIONS BETWEEN TSC GENE MUTATIONS AND THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER THEIR LIFETIME. AS OF DECEMBER 2012, 1,175 PEOPLE WITH TUBEROUS SCLEROSIS COMPLEX WERE ENROLLED IN THE PROJECT FROM AMONG 15 U.S.-BASED SITES AND ONE INTERNATIONAL SITE. 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 2012, THE TS ALLIANCE INVESTED $179,725 IN THE TSC DATABASE. THE TS ALLIANCE RECEIVED THE SECOND HALF OF A TWO-YEAR $200,000 GRANT AWARD FROM THE PEDIATRIC EPILEPSY RESEARCH FOUNDATION IN FALL 2012, WHICH WILL UNDERWRITE A PORTION OF THE OPERATIONAL EXPENSES OF THE TSC DATABASE THROUGH 2013. 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 2012 TSC CLINICAL CONSENSUS CONFERENCE TO UPDATE CONSENSUS RECOMMENDATIONS FOR THE DIAGNOSIS, SURVEILLANCE, AND MANAGEMENT OF TSC. THE PRIOR GUIDELINES WERE BASED ON A 1998 CONSENSUS CONFERENCE, AND THE TSC FIELD HAS MADE TREMENDOUS ADVANCEMENTS IN THE MEANTIME. APPROXIMATELY 80 EXPERTS FROM 14 COUNTRIES PARTICIPATED IN THIS EFFORT TO UPDATE RECOMMENDATIONS AROUND ALL ASPECTS OF TSC: BRAIN TUMORS, DERMATOLOGY AND DENTAL, EPILEPSY, GENETICS, NEUROPSYCHIATRY, PULMONARY, RENAL, AND A COLLECTION OF ADDITIONAL MANIFESTATIONS INCLUDING CARDIAC, ENDOCRINE, GASTROINTESTINAL, AND RETINAL. INDEED, CONSENSUS WAS REACHED DURING THE INTENSE DAY-AND-A-HALF MEETING BASED ON EVALUATION OF DATA IN THE SCIENTIFIC LITERATURE AND EXPERT OPINION. THE TS ALLIANCE WILL FINANCIALLY SUPPORT OPEN-ACCESS PUBLICATION OF PEER-REVIEWED ARTICLES IN MEDICAL JOURNALS TO DESCRIBE THESE GUIDELINES SO THAT THEY ARE FREELY AVAILABLE TO ANYONE AROUND THE WORLD.A TOTAL OF 18 RESEARCH AWARDS WERE FUNDED IN 2012 FOR $839,957. THE TS ALLIANCE ROTHBERG COURAGE AWARD FOR RESEARCH CONTINUED SUPPORTING FIVE 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) WORK BY DR. HOPE NORTHRUP (UNIVERSITY OF TEXAS AT HOUSTON) TO IDENTIFY ADDITIONAL TSC GENES, (4) WORK BY DR. JOHN BISSLER (CINCINNATI CHILDREN'S HOSPITAL AND MEDICAL CENTER) TO DEVELOP MRI-GUIDED HIGH-INTENSITY FOCUSED ULTRASOUND TO TREAT KIDNEY OR LUNG LESIONS; AND (5) 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 11 RESEARCH GRANTS AWARDED IN PREVIOUS YEARS. ADDITIONALLY, A NEW POSTDOCTORAL RESEARCH GRANT WAS INITIATED THIS YEAR TO SUPPORT A YOUNG SCIENTIST WORKING ON TSC RESEARCH. DR. JEANNIE LI (HARVARD UNIVERSITY) WAS AWARDED A POSTDOCTORAL FELLOWSHIP IN LATE 2012 THAT INVOLVES DRUG SCREENING, WHICH WILL BE INITIATED IN EARLY 2013. HER GOAL IS 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 TSC DRUG SCREENING PROGRAM CONTINUED SPONSORING RESEARCH IN DR. ARISTOTELIS ASTRINIDIS' LABORATORY (DREXEL UNIVERSITY) TOWARD FINDING FDA-APPROVED ONCOLOGY DRUGS THAT WILL STOP TUMOR CELL GROWTH IN TSC. THE PROGRAM ALSO CONTINUED FUNDING THE WORK OF DR. JOHN FRANGIONI (BETH ISRAEL DEACONESS HOSPITAL), WHO HAS DEVELOPED A NEW SYSTEM FOR IMAGING OF TUMORS IN LIVE MICE AND HAS SET UP A HIGH-THROUGHPUT SCREEN USING CELLS IN CULTURE IN ORDER TO PRE-SCREEN POTENTIAL DRUGS AND COMPOUNDS PRIOR TO TESTING IN MICE. 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 TS ALLIANCE INVESTED $112,500 TO SUPPORT A NEW TSC CLINICAL RESEARCH CONSORTIUM. THE FIVE CLINICS COMPRISING THIS CONSORTIUM RECEIVED NIH GRANTS TO CONDUCT TWO CLINICAL STUDIES OVER THE NEXT FIVE YEARS. 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. | Description |
Activity2 Activity2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 493457 | Expense |
| Description | 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. THROUGH THE NETWORK OF 32 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, LOCAL EDUCATIONAL AND SUPPORT GROUP MEETINGS ARE HELD THROUGHOUT THE COUNTRY. THE TS ALLIANCE HOSTED 12 EDUCATIONAL MEETINGS AND 20 GATHERINGS HELD AT COMMUNITY ALLIANCE LOCATIONS DURING THE FISCAL YEAR 2012. 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. THE DEPARTMENT OF ADVOCACY AND EDUCATION SUPPORTS FAMILIES AND INDIVIDUALS FROM ALL OVER THE UNITED STATES BY PROVIDING SUPPORT AND INFORMATION INCLUDING DIRECT DURING ONE-ON-ONE MEETINGS. IN ADDITION, VOLUNTEER CLINIC AMBASSADORS SUPPORTED OVER 153 INDIVIDUALS AT TSC CLINICS IN MIAMI, FL; CINCINNATI, OH; COLUMBUS, OH; ATLANTA, GA; NASHVILLE, TN; BIRMINGHAM, AL; AND DENVER, CO.THE DIRECTOR OF ADVOCACY AND EDUCATION ATTENDS INDIVIDUAL EDUCATION PROGRAM (IEP) MEETINGS IN PERSON, THROUGH SKYPE, AND VIA CONFERENCE CALLS TO SUPPORT FAMILIES IN GETTING EDUCATIONAL SERVICES FOR THEIR CHILDREN. THERE ARE 18 ADVOCATE LIAISON VOLUNTEERS, WORKING IN 18 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 1,300 FREE PARENT TRAININGS AND WEBINARS ON EDUCATIONAL ADVOCACY OFFERED TO FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. THERE WERE ALSO 4 EDUCATIONAL SITUATION VIDEOS DEVELOPED AND PLACED ON THE TS ALLIANCE WEBSITE TO SUPPORT PARENTS IN GETTING AN APPROPRIATE EDUCATION FOR THEIR CHILDREN. THERE WERE 30 ONLINE CHATS HELD FOR SIBLINGS AGES 8-13, 14-18, AND ADULTS TO SUPPORT ISSUES SIBLINGS FACE ON A DAILY BASIS HAVING A BROTHER OR SISTER WITH TSC. A NEW SIBLING FACEBOOK PAGE WAS DEVELOPED TO BETTER SERVE THIS POPULATION. THE DIRECTOR OF EDUCATION AND ADVOCACY ALSO FACILITATES THE ADULT TASK FORCE, AND HELD 9 MONTHLY TOPIC CALLS ON IDENTIFIED ISSUES OF IMPORTANCE TO BETTER SUPPORT ADULTS LIVING WITH TSC. THE ADULT REGIONAL COORDINATOR PROGRAM WAS DEVELOPED WITH 10 ADULT VOLUNTEERS NOW SUPPORTING ADULTS 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 OVER 1,500 MEMBERS FROM 69 COUNTRIES AS OF DECEMBER 31, 2012. | Description |
Activity3 Activity3
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 335697 | Expense |
| Description | 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 2012, THE TS ALLIANCE PRODUCED THREE ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO MORE THAN 13,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION WITH 799,000 TO 1.2 MILLION HITS MONTHLY FROM AN AVERAGE OF MORE THAN 9,250 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 5,000 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 600-PLUS FOLLOWERS. THE TS ALLIANCE ALSO PROVIDES PUBLIC EDUCATION THROUGH A SERIES OF REGIONAL TSC CONFERENCES; FOUR WERE HELD IN 2012 INCLUDING WASHINGTON, DC; HOUSTON, TX; LOS ANGELES, CA; AND BOSTON, MA. TO INCREASE PUBLIC AWARENESS, THE TS ALLIANCE HEAVILY PROMOTED MAY AS NATIONAL TSC AWARENESS MONTH VIA ITS VARIOUS SOCIAL MEDIA AND WEB PROPERTIES, AND IT TOOK THE LEAD IN PROMOTING THE VERY FIRST TSC GLOBAL AWARENESS DAY ON MAY 15. THIS INCLUDED A RADIO MEDIA TOUR AND AUDIO RELEASE ON TSC GLOBAL AWARENESS DAY WITH TOTAL OUTREACH TO 8,065,000 LISTENERS ON 2,007 NETWORKS AND 2,015 AIRINGS AND A WINDOW DISPLAY IN ROCKEFELLER CENTER, NEW YORK CITY THROUGHOUT MAY. WITH THE FDA-APPROVAL OF THE SECOND TSC INDICATION, THE TS ALLIANCE BROADENED PUBLIC AWARENESS THROUGH OUTREACH TO PRESS AND PARTICIPATION IN A SECOND RADIO MEDIA TOUR REACHING A TOTAL LISTENERSHIP OF 3,913,000 WITH PLACEMENT ON 19 NETWORKS. IN 2012, THE TS ALLIANCE CO-SPONSORED A REPORT ON EPILEPSY BY THE INSTITUTE OF MEDICINE THROUGH OUR PARTNERSHIP WITH VISION 2020, A COALITION THAT FOCUSES ON EPILEPSY RESEARCH, CARE, SERVICES, EDUCATION, AND ADVOCACY EFFORTS. THIS LANDMARK STUDY PROVIDES THE BLUEPRINT FOR IMPROVING THE OUTCOMES FOR THOSE LIVING WITH EPILEPSY. A FULL REPORT AND RECOMMENDATIONS CAN BE FOUND AT: HTTP://WWW.IOM.EDU/REPORTS/2012/EPILEPSY-ACROSS-THE-SPECTRUM.ASPX. | Description |
Activity Other ActivityOther
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 725124 | Expense |
| Description | 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 PARTICIPATED IN AND PRESENTED AT SEVERAL PROFESSIONAL MEETINGS INCLUDING: LAM FOUNDATION CONFERENCE; 4TH INTERNATIONAL BIRT-HOGG-DUBE SYMPOSIUM; WORLD ORPHAN DRUG CONGRESS; ASSOCIATION OF CLINICAL RESEARCH PROFESSIONALS CONFERENCE; NINDS AUTISM AND EPILEPSY WORKSHOP; INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE); PARTNERING TO ADVANCE THERAPEUTICS FOR NEUROLOGICAL DISORDERS: THE NINDS NONPROFIT FORUM; NORD/DIA ANNUAL CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS; CHILD NEUROLOGY SOCIETY ANNUAL MEETING; AND THE INTERNATIONAL TSC RESEARCH CONFERENCE IN ITALY. 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 THE TSC SPECIAL INTEREST GROUP SCIENTIFIC SESSION. 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. GOVERNMENT RELATIONS FOCUSES ON EDUCATING MEMBERS OF CONGRESS ABOUT TSC TO FURTHER TSC RESEARCH, AWARENESS AND CLINICAL CARE. IN 2012, THE TS ALLIANCE GRASSROOTS VOLUNTEERS CONDUCTED A MARCH ON CAPITOL HILL RESULTING IN 66 MEMBERS OF THE HOUSE OF REPRESENTATIVES SIGNING A LETTER OF SUPPORT CIRCULATED BY REPRESENTATIVE LORETTA SANCHEZ (D-CA) AND 13 SENATORS SIGNING A BIPARTISAN LETTER OF SUPPORT CIRCULATED BY SENATOR RON WYDEN (D-OR) FOR FY13 APPROPRIATIONS. THE US CONGRESS APPROPRIATED $6 MILLION FOR FY13 TO TSC RESEARCH THROUGH THE DEPARTMENT OF DEFENSE'S 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. THROUGH 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 AND A THROUGH TSCRP FUNDED RESEARCH ON THE DEVELOPMENT OF ANIMAL MODELS OF TSC THAT HAVE SEIZURES AND A BETTER UNDERSTAND THE ETIOLOGY OF TSC, A CLINICAL TRIAL IS PLANNED 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 THE INAUGURAL TSC GLOBAL AWARENESS DAY ON MAY 15, 2012. THIS EVENT WAS ATTENDED BY CONGRESSIONAL STAFF AND KEY MEMBERS OF THE TSC RESEARCH AND GRASSROOTS COMMUNITY. | Description |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Other Program Service Exp | 725124 | TotalOfOtherProgramServiceExp |
| Total Program Service Expense | 2601218 | TotalProgramServiceExpense |
| Described In501 C3 | 1 | DescribedIn501C3 |
| Schedule B Required | 1 | ScheduleBRequired |
| Political Activities | 0 | PoliticalActivities |
| Lobbying Activities | 1 | LobbyingActivities |
| Subject To Proxy Tax | 0 | SubjectToProxyTax |
| Donor Advised Funds | 0 | DonorAdvisedFunds |
| Conservation Easements | 0 | ConservationEasements |
| Collections Of Art | 0 | CollectionsOfArt |
| Credit Counseling | 0 | CreditCounseling |
| Term Or Permanent Endowments | 1 | TermOrPermanentEndowments |
| Report Land Bldg Equip | 1 | ReportLandBldgEquip |
| Report Invest Oth Securities | 0 | ReportInvestOthSecurities |
| Report Prog Rel Invest | 0 | ReportProgRelInvest |
| Report Other Assets | 1 | ReportOtherAssets |
| Report Other Liabilities | 1 | ReportOtherLiabilities |
| Report Fin48 Footnote | 1 | ReportFin48Footnote |
| Independent Audit Financial Stmt | 0 | IndependentAuditFinancialStmt |
| Consolidated Audit Financial Stmt | 1 | ConsolidatedAuditFinancialStmt |
| School | 0 | School |
| Foreign Office | 0 | ForeignOffice |
| Foreign Activities | 1 | ForeignActivities |
| More Than5000 K To Organizations | 1 | MoreThan5000KToOrganizations |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividuals |
| Professional Fundraising | 1 | ProfessionalFundraising |
| Fundraising Activities | 1 | FundraisingActivities |
| Gaming | 0 | Gaming |
| Hospital | 0 | Hospital |
| Grants To Organizations | 1 | GrantsToOrganizations |
| Grants To Individuals | 0 | GrantsToIndividuals |
| Schedule J Required | 1 | ScheduleJRequired |
| Tax Exempt Bonds | 0 | TaxExemptBonds |
| Excess Benefit Transaction | 0 | ExcessBenefitTransaction |
| Prior Excess Benefit Transaction | 0 | PriorExcessBenefitTransaction |
| Loan To Officer Or DQP | 0 | LoanToOfficerOrDQP |
| Grant To Related Person | 0 | GrantToRelatedPerson |
| Bsnss Rltnshp With Organization | 0 | BsnssRltnshpWithOrganization |
| Bsnss Rltnshp Thru Family Member | 1 | BsnssRltnshpThruFamilyMember |
| Officer Entity With Bsnss Rltnshp | 0 | OfficerEntityWithBsnssRltnshp |
| Deductible Non Cash Contributions | 1 | DeductibleNonCashContributions |
| Deductible Contributions Of Art | 0 | DeductibleContributionsOfArt |
| Terminated | 0 | Terminated |
| Partial Liquidation | 0 | PartialLiquidation |
| Disregarded Entity | 0 | DisregardedEntity |
| Related Entity | 1 | RelatedEntity |
| Related Org Controlled Entity | 0 | RelatedOrgControlledEntity |
| Transfers To Exempt Non Chrtbl Org | 0 | TransfersToExemptNonChrtblOrg |
| Activities Conducted Partnership | 0 | ActivitiesConductedPartnership |
| Schedule O Required | 1 | ScheduleORequired |
| Number Forms Transmitted With1096 | 23 | NumberFormsTransmittedWith1096 |
| Number W2 G Included | 0 | NumberW2GIncluded |
| Compliance With Backup Witholding | 1 | ComplianceWithBackupWitholding |
| Number Of Employees | 16 | NumberOfEmployees |
| Employment Tax Returns Filed | 1 | EmploymentTaxReturnsFiled |
| Unrelated Business Income | 0 | UnrelatedBusinessIncome |
| Foreign Financial Account | 0 | ForeignFinancialAccount |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTrans |
| Taxable Party Notification | 0 | TaxablePartyNotification |
| Non Deductible Contributions | 0 | NonDeductibleContributions |
| Quid Pro Quo Contributions | 1 | QuidProQuoContributions |
| Quid Pro Quo Disclosure | 1 | QuidProQuoDisclosure |
| Form8282 Property Disposed Of | 1 | Form8282PropertyDisposedOf |
| Number Of8282 Filed | 1 | NumberOf8282Filed |
| Indoor Tanning Services | 0 | IndoorTanningServices |
| Info In Schedule O Part VI | X | InfoInScheduleOPartVI |
| Nbr Voting Governing Body Members | 26 | NbrVotingGoverningBodyMembers |
| Number Independent Voting Members | 25 | NumberIndependentVotingMembers |
| Family Or Business Relationship | 0 | FamilyOrBusinessRelationship |
| Delegation Of Management Duties | 0 | DelegationOfManagementDuties |
| Changes To Organizing Docs | 1 | ChangesToOrganizingDocs |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuse |
| Members Or Stockholders | 1 | MembersOrStockholders |
| Election Of Board Members | 1 | ElectionOfBoardMembers |
| Decisions Subject To Approval | 0 | DecisionsSubjectToApproval |
| Minutes Of Governing Body | 1 | MinutesOfGoverningBody |
| Minutes Of Committees | 1 | MinutesOfCommittees |
| Officer Mailing Address | 0 | OfficerMailingAddress |
| Local Chapters | 1 | LocalChapters |
| Policies Reference Chapters | 1 | PoliciesReferenceChapters |
| Form990 Provided To Governing Body | 1 | Form990ProvidedToGoverningBody |
| Conflict Of Interest Policy | 1 | ConflictOfInterestPolicy |
| Annual Disclosure Covered Persons | 1 | AnnualDisclosureCoveredPersons |
| Regular Monitoring Enforcement | 1 | RegularMonitoringEnforcement |
| Whistleblower Policy | 1 | WhistleblowerPolicy |
| Document Retention Policy | 1 | DocumentRetentionPolicy |
| Compensation Process CEO | 1 | CompensationProcessCEO |
| Compensation Process Other | 1 | CompensationProcessOther |
| Investment In Joint Venture | 0 | InvestmentInJointVenture |
| States Where Copy Of Return Is Filed | MD | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | DC | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | ND | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AK | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AZ | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | RI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | PA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CO | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NH | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NC | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OH | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OR | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | VA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | ME | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | GA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NV | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AR | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | HI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | IL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | KS | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | KY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | TN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NJ | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NM | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | UT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WV | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OK | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | FL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | SC | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MS | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | LA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | TX | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MO | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | DE | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | ID | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | IN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | IA | StatesWhereCopyOfReturnIsFiled |
| Own Website | X | OwnWebsite |
| Other Website | X | OtherWebsite |
| Upon Request | X | UponRequest |
The Books Are In Care Of TheBooksAreInCareOf
Name Business NameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE ORGANIZATION | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Telephone Number | 3015629890 | TelephoneNumber |
Address US AddressUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD NO 750 | AddressLine1 |
| City | SILVER SPRING | City |
| State | MD | State |
| ZIP Code | 20910 | ZIPCode |
Form990 Part VII Section A Form990PartVIISectionA (29 entries)
| TitleTitle | Average Hours Per WeekAverageHoursPerWeek | Individual Trustee Or DirectorIndividualTrusteeOrDirector | OfficerOfficer | Reportable Comp From OrganizationReportableCompFromOrganization | Reportable Comp From Related OrgsReportableCompFromRelatedOrgs | Other CompensationOtherCompensation | Average Hours Per Week RelatedAverageHoursPerWeekRelated | Key EmployeeKeyEmployee |
|---|---|---|---|---|---|---|---|---|
| HENRY SHAPIRO | ||||||||
| CHAIR | 5.00 | X | X | 0 | 0 | 0 | ||
| MATT BOLGER | ||||||||
| VICE CHAIR | 5.00 | X | X | 0 | 0 | 0 | ||
| DAVID PARKES | ||||||||
| IMMEDIATE PAST CHAIR | 5.00 | X | X | 0 | 0 | 0 | ||
| CELIA MASTBAUM | ||||||||
| TREASURER | 5.00 | X | X | 0 | 0 | 0 | ||
| KEITH HALL | ||||||||
| SECRETARY | 5.00 | X | X | 0 | 0 | 0 | ||
| JULIE BLUM | ||||||||
| BOARD MEMBER | 3.00 | X | 0 | 0 | 0 | |||
| MARK CARROLL | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| RITA DIDOMENICO | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| PETER CRINO MD PHD | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| REIKO DONATO | ||||||||
| BOARD MEMBER | 4.00 | X | 0 | 0 | 0 | |||
| WILLIAM FORD | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| JENNIFER GLASSMAN | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| STEVEN GOLDSTEIN | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| ROB MOSS | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| RON HEFFRON | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| ELIZABETH HENSKE MD | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| LINDA JACKSON | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| DEBORA MORITZ | ||||||||
| BOARD MEMBER | 4.00 | X | 0 | 0 | 0 | |||
| THEODORE MASTROIANNI | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| ALAN MARSHALL | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| DAVID MICHAELS | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| COURTNEY O'MALLEY | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| JOHN NICHOLSON | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| REBECCA ANHANG PRICE | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| JUDITH SHOULAK | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| ELIZABETH THIELE MD PHD | ||||||||
| BOARD MEMBER | 2.00 | X | 0 | 0 | 0 | |||
| KARI L ROSBECK | ||||||||
| PRESIDENT & CEO | 50.00 | X | 138889 | 13889 | 34200 | 5.00 | ||
| MARY JANE PERRAUT | ||||||||
| CHIEF FINANCIAL OFFICER | 45.00 | X | 95260 | 11907 | 11322 | 5.00 | ||
| STEVEN L ROBERDS | ||||||||
| CHIEF SCIENTIFIC OFFICER | 45.00 | 158107 | 0 | 27901 | X | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | 392256 | TotalReportableCompFromOrg |
| Total Reportable Comp Frm Rltd Orgs | 25796 | TotalReportableCompFrmRltdOrgs |
| Total Other Compensation | 73423 | TotalOtherCompensation |
| Number Individuals GT100 K | 3 | NumberIndividualsGT100K |
| Formers Listed | 0 | FormersListed |
| Total Comp GT150 K | 1 | TotalCompGT150K |
| Compensation From Other Sources | 0 | CompensationFromOtherSources |
| Number Of Contractors GT100 K | 0 | NumberOfContractorsGT100K |
| Federated Campaigns | 82623 | FederatedCampaigns |
| Fundraising Events | 1610679 | FundraisingEvents |
| Related Organizations | 202000 | RelatedOrganizations |
| All Other Contributions | 1304341 | AllOtherContributions |
| Noncash Contributions | 28975 | NoncashContributions |
| Total Contributions | 3199643 | TotalContributions |
Program Service Revenue ProgramServiceRevenue (2 entries)
| DescriptionDescription | Business CodeBusinessCode | Total Revenue ColumnTotalRevenueColumn | Related Or Exempt Function IncomeRelatedOrExemptFunctionIncome |
|---|---|---|---|
| RESEARCH PROGRAM REVEN | 900099 | 116786 | 116786 |
| NOVARTIS CONTRACT | 900099 | 86000 | 86000 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | 202786 | TotalProgramServiceRevenue |
Investment Income InvestmentIncome
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 9794 | TotalRevenueColumn |
| Exclusion | $9,794 | ExclusionAmount |
Less Cost Oth Basis Sales Expenses LessCostOthBasisSalesExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | 125 | Securities |
Gain Or Loss GainOrLoss
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -125 | Securities |
Net Gain Or Loss Investments NetGainOrLossInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -125 | TotalRevenueColumn |
| Exclusion | -$125 | ExclusionAmount |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Income Fundraising Events | 19470 | GrossIncomeFundraisingEvents |
| Cntrbtns Rprtd Fundraising Events | 1610679 | CntrbtnsRprtdFundraisingEvents |
| Fundraising Direct Expenses | 109818 | FundraisingDirectExpenses |
Net Income From Fundraising Events NetIncomeFromFundraisingEvents
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -90348 | TotalRevenueColumn |
| Exclusion | -$90,348 | ExclusionAmount |
Other Revenue Misc OtherRevenueMisc
| Field | Value | IRS element (for citing) |
|---|---|---|
| Description | OTHER | Description |
| Business Code | 900099 | BusinessCode |
| Total Revenue Column | 22550 | TotalRevenueColumn |
| Exclusion | $22,550 | ExclusionAmount |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Revenue | 22550 | TotalOtherRevenue |
Total Revenue TotalRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 3344300 | TotalRevenueColumn |
| Related Or Exempt Function Income | 202786 | RelatedOrExemptFunctionIncome |
| Unrelated Business Revenue | 0 | UnrelatedBusinessRevenue |
| Exclusion | -$58,129 | ExclusionAmount |
Grants To Domestic Orgs GrantsToDomesticOrgs
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 762957 | Total |
| Program Services | 762957 | ProgramServices |
Foreign Grants ForeignGrants
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 77000 | Total |
| Program Services | 77000 | ProgramServices |
Comp Current Officers Directors CompCurrentOfficersDirectors
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 491475 | Total |
| Program Services | 289424 | ProgramServices |
| Management And General | 79422 | ManagementAndGeneral |
| Fundraising | 122629 | Fundraising |
Other Salaries And Wages OtherSalariesAndWages
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 595250 | Total |
| Program Services | 350687 | ProgramServices |
| Management And General | 96291 | ManagementAndGeneral |
| Fundraising | 148272 | Fundraising |
Pension Plan Contributions PensionPlanContributions
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 16717 | Total |
| Program Services | 9820 | ProgramServices |
| Management And General | 2686 | ManagementAndGeneral |
| Fundraising | 4211 | Fundraising |
Other Employee Benefits OtherEmployeeBenefits
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 65473 | Total |
| Program Services | 38462 | ProgramServices |
| Management And General | 10519 | ManagementAndGeneral |
| Fundraising | 16492 | Fundraising |
Payroll Taxes PayrollTaxes
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 84156 | Total |
| Program Services | 49438 | ProgramServices |
| Management And General | 13520 | ManagementAndGeneral |
| Fundraising | 21198 | Fundraising |
Fees For Services Legal FeesForServicesLegal
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 30133 | Total |
| Program Services | 14246 | ProgramServices |
| Management And General | 12232 | ManagementAndGeneral |
| Fundraising | 3655 | Fundraising |
Fees For Services Accounting FeesForServicesAccounting
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 29788 | Total |
| Program Services | 16775 | ProgramServices |
| Management And General | 5563 | ManagementAndGeneral |
| Fundraising | 7450 | Fundraising |
Fees For Services Lobbying FeesForServicesLobbying
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 98880 | Total |
| Program Services | 98880 | ProgramServices |
Fees For Services Prof Fundraising FeesForServicesProfFundraising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 16500 | Total |
| Fundraising | 16500 | Fundraising |
Fees For Services Other FeesForServicesOther
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 59342 | Total |
| Program Services | 24319 | ProgramServices |
| Management And General | 3202 | ManagementAndGeneral |
| Fundraising | 31821 | Fundraising |
Office Expenses OfficeExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 245670 | Total |
| Program Services | 105992 | ProgramServices |
| Management And General | 64256 | ManagementAndGeneral |
| Fundraising | 75422 | Fundraising |
Information Technology InformationTechnology
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 62333 | Total |
| Program Services | 15600 | ProgramServices |
| Management And General | 46310 | ManagementAndGeneral |
| Fundraising | 423 | Fundraising |
Occupancy Occupancy
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 144950 | Total |
| Management And General | 144950 | ManagementAndGeneral |
Travel Travel
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 205354 | Total |
| Program Services | 177292 | ProgramServices |
| Management And General | 1690 | ManagementAndGeneral |
| Fundraising | 26372 | Fundraising |
Conferences Meetings ConferencesMeetings
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 88911 | Total |
| Program Services | 76693 | ProgramServices |
| Management And General | 12113 | ManagementAndGeneral |
| Fundraising | 105 | Fundraising |
Depreciation Depletion DepreciationDepletion
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 47306 | Total |
| Program Services | 44840 | ProgramServices |
| Management And General | 2466 | ManagementAndGeneral |
Insurance Insurance
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 8249 | Total |
| Management And General | 8249 | ManagementAndGeneral |
Other Expenses OtherExpenses (4 entries)
| DescriptionDescription | TotalTotal | Program ServicesProgramServices | Management And GeneralManagementAndGeneral | FundraisingFundraising |
|---|---|---|---|---|
| NATURAL HISTORY DATABAS | 179725 | 179725 | ||
| CLINICAL RESEARCH NETWO | 112501 | 112501 | ||
| BANK AND CREDIT CARD FE | 39446 | 39446 | ||
| EQUIPMENT & MAINTENANCE | 14391 | 1498 | 10757 | 2136 |
All Other Expenses AllOtherExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 12197 | Total |
| Program Services | 155069 | ProgramServices |
| Management And General | -209736 | ManagementAndGeneral |
| Fundraising | 66864 | Fundraising |
Total Functional Expenses TotalFunctionalExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 3488704 | Total |
| Program Services | 2601218 | ProgramServices |
| Management And General | 343936 | ManagementAndGeneral |
| Fundraising | 543550 | Fundraising |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Joint Costs | X | JointCosts |
Total Joint Costs TotalJointCosts
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 87606 | Total |
| Program Services | 43803 | ProgramServices |
| Management And General | 0 | ManagementAndGeneral |
| Fundraising | 43803 | Fundraising |
Cash Non Interest Bearing CashNonInterestBearing
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2222455 | BOY |
| EOY | 2334967 | EOY |
Savings And Temp Cash Investments SavingsAndTempCashInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 864087 | BOY |
| EOY | 492140 | EOY |
Pledges And Grants Receivable PledgesAndGrantsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 379000 | BOY |
| EOY | 336000 | EOY |
Accounts Receivable AccountsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 319 | BOY |
| EOY | 86517 | EOY |
Inventories For Sale Or Use InventoriesForSaleOrUse
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 8002 | BOY |
| EOY | 4395 | EOY |
Prepaid Expenses Deferred Charges PrepaidExpensesDeferredCharges
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 138019 | BOY |
| EOY | 155998 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Buildings Equipment Basis | 377609 | LandBuildingsEquipmentBasis |
| Land Bldg Equipment Accum Deprec | 277197 | LandBldgEquipmentAccumDeprec |
Land Buildings Equipment Basis Net LandBuildingsEquipmentBasisNet
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 141717 | BOY |
| EOY | 100412 | EOY |
Other Assets Total OtherAssetsTotal
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 4221079 | BOY |
| EOY | 4452762 | EOY |
Total Assets TotalAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 7974678 | BOY |
| EOY | 7963191 | EOY |
Accounts Payable Accrued Expenses AccountsPayableAccruedExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 143549 | BOY |
| EOY | 32281 | EOY |
Deferred Revenue DeferredRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1628 | BOY |
| EOY | 1628 | EOY |
Other Liabilities OtherLiabilities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 77136 | BOY |
| EOY | 85127 | EOY |
Total Liabilities TotalLiabilities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 222313 | BOY |
| EOY | 119036 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Follow SFAS117 | X | FollowSFAS117 |
Unrestricted Net Assets UnrestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 4804940 | BOY |
| EOY | 5255154 | EOY |
Temporarily Restricted Net Assets TemporarilyRestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2067981 | BOY |
| EOY | 1709557 | EOY |
Permanently Restricted Net Assets PermanentlyRestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 879444 | BOY |
| EOY | 879444 | EOY |
Total Net Assets Fund Balances TotalNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 7752365 | BOY |
| EOY | 7844155 | EOY |
Total Liab Net Assets Fund Balances TotalLiabNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 7974678 | BOY |
| EOY | 7963191 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | X | InfoInScheduleOPartXI |
| Reconcilation Revenue Expenses | -144404 | ReconcilationRevenueExpenses |
| Reconciliation Unrealized Invest | -19 | ReconciliationUnrealizedInvest |
| Reconcilation Other Changes | 236215 | ReconcilationOtherChanges |
| Info In Schedule O Part XII | X | InfoInScheduleOPartXII |
| Method Of Accounting Accrual | X | MethodOfAccountingAccrual |
| Accountant Compile Or Review | 0 | AccountantCompileOrReview |
| FS Audited | 1 | FSAudited |
FS Audited Basis FSAuditedBasis
| Field | Value | IRS element (for citing) |
|---|---|---|
| Financial Statement Consolidated | X | FinancialStatementConsolidated |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | 1 | AuditCommittee |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequired |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Publicly Supported Org170b1 Avi | X | PubliclySupportedOrg170b1Avi |
Gifts Grants Contrib Received170 GiftsGrantsContribReceived170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 3324865 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 3221297 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 1449542 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 3812563 | CurrentTaxYearMinus1Year |
| Current Tax Year | 3199643 | CurrentTaxYear |
| Total | 15007910 | Total |
Total170 Total170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 3324865 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 3221297 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 1449542 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 3812563 | CurrentTaxYearMinus1Year |
| Current Tax Year | 3199643 | CurrentTaxYear |
| Total | 15007910 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Amounts Subst Contributors Total | 252551 | AmountsSubstContributorsTotal |
| Public Support Total170 | 14755359 | PublicSupportTotal170 |
Gross Investment Income170 GrossInvestmentIncome170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 35978 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 4704 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 7821 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 9722 | CurrentTaxYearMinus1Year |
| Current Tax Year | 9794 | CurrentTaxYear |
| Total | 68019 | Total |
Other Income170 OtherIncome170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 13767 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 3967 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 5728 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 13037 | CurrentTaxYearMinus1Year |
| Current Tax Year | 23048 | CurrentTaxYear |
| Total | 59547 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | 15135476 | TotalSupport |
| Gross Receipts From Admissions Etc | 2228284 | GrossReceiptsFromAdmissionsEtc |
| Public Support Pertcentage170 | 0.97490 | PublicSupportPertcentage170 |
| Public Support Pertcent Prior Year | 0.93450 | PublicSupportPertcentPriorYear |
| Thirty Three Percnt Tests CY170 | X | ThirtyThreePercntTestsCY170 |
Schedule B IRS990ScheduleB
Contributor Info ContributorInfo
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor Number | RESTRICTED | ContributorNumber |
Contributor Name Business ContributorNameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor Address US ContributorAddressUS
| 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) |
|---|---|---|
| Aggregate Contributions | RESTRICTED | AggregateContributions |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbying
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 16179 | FilingOrganizationsTotals |
Total Direct Lobbying TotalDirectLobbying
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 125231 | FilingOrganizationsTotals |
Total Lobbying Expenditures TotalLobbyingExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 141410 | FilingOrganizationsTotals |
Other Exempt Purpose Expenditures OtherExemptPurposeExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 3330791 | FilingOrganizationsTotals |
Total Exempt Purpose Expenditures TotalExemptPurposeExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 3472201 | FilingOrganizationsTotals |
Lobbying Nontaxable LobbyingNontaxableAmount
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 323610 | FilingOrganizationsTotals |
Grassroots Nontaxable GrassrootsNontaxableAmount
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 80903 | FilingOrganizationsTotals |
Tot Lobbying Grassroot Minus Non Tx TotLobbyingGrassrootMinusNonTx
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 0 | FilingOrganizationsTotals |
Tot Lobby Expend Mns Lobbying Nontx TotLobbyExpendMnsLobbyingNontx
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 0 | FilingOrganizationsTotals |
Lobbying Nontaxable Amount2 LobbyingNontaxableAmount2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | 326843 | CurrentYearMinus3 |
| Current Year Minus2 | 226416 | CurrentYearMinus2 |
| Current Year Minus1 | 334138 | CurrentYearMinus1 |
| Current Year | 323610 | CurrentYear |
| Total | 1211007 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $1,816,511 | LobbyingCeilingAmount |
Total Lobbying Expenditures2 TotalLobbyingExpenditures2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | 152958 | CurrentYearMinus3 |
| Current Year Minus2 | 74182 | CurrentYearMinus2 |
| Current Year Minus1 | 163120 | CurrentYearMinus1 |
| Current Year | 141410 | CurrentYear |
| Total | 531670 | Total |
Grassroots Nontaxable Amount2 GrassrootsNontaxableAmount2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | 81711 | CurrentYearMinus3 |
| Current Year Minus2 | 56604 | CurrentYearMinus2 |
| Current Year Minus1 | 83535 | CurrentYearMinus1 |
| Current Year | 80903 | CurrentYear |
| Total | 302753 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $454,130 | GrassrootsCeilingAmount |
Grassroots Lobbying Expenditures GrassrootsLobbyingExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | 34107 | CurrentYearMinus3 |
| Current Year Minus2 | 7007 | CurrentYearMinus2 |
| Current Year Minus1 | 7688 | CurrentYearMinus1 |
| Current Year | 16179 | CurrentYear |
| Total | 64981 | Total |
Schedule D IRS990ScheduleD
Current Year CurrentYear
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Of Year Balance | 4221150 | BeginningOfYearBalance |
| Contributions | 43996 | Contributions |
| Investment Earnings Or Losses | 420983 | InvestmentEarningsOrLosses |
| Other Expenditures | 202000 | OtherExpenditures |
| Administrative Expenses | 26764 | AdministrativeExpenses |
| End Of Year Balance | 4457365 | EndOfYearBalance |
Current Year Minus1 Year CurrentYearMinus1Year
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Of Year Balance | 4443045 | BeginningOfYearBalance |
| Contributions | 29825 | Contributions |
| Investment Earnings Or Losses | -47583 | InvestmentEarningsOrLosses |
| Other Expenditures | 175000 | OtherExpenditures |
| Administrative Expenses | 29137 | AdministrativeExpenses |
| End Of Year Balance | 4221150 | EndOfYearBalance |
Current Year Minus2 Years CurrentYearMinus2Years
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Of Year Balance | 3866081 | BeginningOfYearBalance |
| Contributions | 13835 | Contributions |
| Investment Earnings Or Losses | 584775 | InvestmentEarningsOrLosses |
| Administrative Expenses | 21646 | AdministrativeExpenses |
| End Of Year Balance | 4443045 | EndOfYearBalance |
Current Year Minus3 Years CurrentYearMinus3Years
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Of Year Balance | 3750509 | BeginningOfYearBalance |
| Contributions | 13523 | Contributions |
| Investment Earnings Or Losses | 312223 | InvestmentEarningsOrLosses |
| Other Expenditures | 210174 | OtherExpenditures |
| End Of Year Balance | 3866081 | EndOfYearBalance |
Current Year Minus4 Years CurrentYearMinus4Years
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Of Year Balance | 4856856 | BeginningOfYearBalance |
| Contributions | 6722 | Contributions |
| Investment Earnings Or Losses | -832060 | InvestmentEarningsOrLosses |
| Other Expenditures | 281009 | OtherExpenditures |
| End Of Year Balance | 3750509 | EndOfYearBalance |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated EOY Balance | 0.78840 | BoardDesignatedEOYBalance |
| Permanent Endowment EOY Balance | 0.19730 | PermanentEndowmentEOYBalance |
| Term Endowment EOY Balance | 0.01430 | TermEndowmentEOYBalance |
| Endowments Held By Unrelated Orgs | 0 | EndowmentsHeldByUnrelatedOrgs |
| Endowments Held By Related Orgs | 1 | EndowmentsHeldByRelatedOrgs |
| Are Related Orgs Listed Schedule R | 1 | AreRelatedOrgsListedScheduleR |
Leasehold Improvements LeaseholdImprovements
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | 27000 | OtherCostOrOtherBasis |
| Depreciation | 27000 | Depreciation |
| Book Value | 0 | BookValue |
Equipment Equipment
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | 21819 | OtherCostOrOtherBasis |
| Depreciation | 13930 | Depreciation |
| Book Value | 7889 | BookValue |
Other Land Buildings OtherLandBuildings
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | 328790 | OtherCostOrOtherBasis |
| Depreciation | 236267 | Depreciation |
| Book Value | 92523 | BookValue |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Book Value Land Buildings | 100412 | TotalOfBookValueLandBuildings |
Other Assets OtherAssets (2 entries)
| DescriptionDescription | Book ValueBookValue |
|---|---|
| INTEREST IN NET ASSETS OF AFFILIATE | 4457365 |
| DUE FROM AFFILIATE | -4603 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | 4452762 | TotalBookValueOtherAssets |
Other Liabilities OtherLiabilities
| Field | Value | IRS element (for citing) |
|---|---|---|
| Description | ACCRUED COMPENSATION | Description |
| Amount | $85,127 | Amount |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Amounts | 85127 | TotalOfAmounts |
| Footnote In Part XIII | X | FootnoteInPartXIII |
| Tot Revenue Etc Audited Fincl Stmt | 3679620 | TotRevenueEtcAuditedFinclStmt |
| Net Unrealized Gains Investments | -19 | NetUnrealizedGainsInvestments |
| Donated Srvc And Use Of Facilities | 99124 | DonatedSrvcAndUseOfFacilities |
| Other Revenues | 236215 | OtherRevenues |
| Revenue Not Rptd F990 | 335320 | RevenueNotRptdF990 |
| Revenue Subtotal | 3344300 | RevenueSubtotal |
| Revenue Not Rptd On Fin Stmt | 0 | RevenueNotRptdOnFinStmt |
| Total Revenue Per Form990 | 3344300 | TotalRevenuePerForm990 |
| Tot Expenses Etc Audited Fincl Stmt | 3587830 | TotExpensesEtcAuditedFinclStmt |
| Donated Services Use Of Facilities | 99124 | DonatedServicesUseOfFacilities |
| Expenses Not Rptd F990 | 99124 | ExpensesNotRptdF990 |
| Expenses Subtotal | 3488706 | ExpensesSubtotal |
| Expenses Not Rptd On Fin Stmt | 0 | ExpensesNotRptdOnFinStmt |
| Total Expenses Per Form990 | 3488706 | TotalExpensesPerForm990 |
Form990 Schedule D Part XIII Form990ScheduleDPartXIII (3 entries)
| IdentifierIdentifier | Return ReferenceReturnReference | ExplanationExplanation |
|---|---|---|
| DESCRIPTION OF INTENDED USE OF ENDOWMENT FUNDS: | 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. |
| DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: | PART X, LINE 2: | THE ALLIANCE BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR ANY INCOME TAX POSITIONS TAKEN. THEREFORE, MANAGEMENT HAS NOT IDENTIFIED ANY UNCERTAIN INCOME TAX POSITIONS. AT A MINIMUM, THE JUNE 30, 2009 THROUGH DECEMBER 31, 2012 TAX PERIODS ARE OPEN FOR EXAMINATION BY TAXING AUTHORITIES. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | CHANGE IN INTEREST IN ENDOWMENT FUND 236,215. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintained |
Accts Actvs Out US Table AcctsActvsOutUSTable
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE | Region |
| Number Of Offices | 0 | NumberOfOffices |
| Number Of Employees | 0 | NumberOfEmployees |
| Type Of Activities Conducted | GRANTS TO RECIPIENTS | TypeOfActivitiesConducted |
| Specific Services Provided | RESEARCH AWARDS | SpecificServicesProvided |
| Total Expenditures | 77000 | TotalExpenditures |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Number Of Offices | 0 | SubtotalNumberOfOffices |
| Subtotal Number Of Employees | 0 | SubtotalNumberOfEmployees |
| Cont Number Of Offices | 0 | ContNumberOfOffices |
| Cont Number Of Employees | 0 | ContNumberOfEmployees |
| Total Number Of Offices | 0 | TotalNumberOfOffices |
| Total Number Of Employees | 0 | TotalNumberOfEmployees |
| Subtotal Amount Spent | 77000 | SubtotalAmountSpent |
| Cont Amount Spent | 0 | ContAmountSpent |
| Total Amount Spent | 77000 | TotalAmountSpent |
Grants To Orgs Outside US GrantsToOrgsOutsideUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | EUROPE | Region |
| Purpose Of Grant | RESEARCH GRANT | PurposeOfGrant |
| Amount Of Cash Grant | 77000 | AmountOfCashGrant |
| Manner Of Cash Disbursement | CHECK | MannerOfCashDisbursement |
| Method Of Valuation | CASH | MethodOfValuation |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | 0 | TransferToForeignCorp |
| Interest In Foreign Trust | 0 | InterestInForeignTrust |
| Own Foreign Corp | 0 | OwnForeignCorp |
| Passive Foreign Invest Co | 0 | PassiveForeignInvestCo |
| Foreign Partnership | 0 | ForeignPartnership |
| Boycott Countries | 0 | BoycottCountries |
Form990 Schedule F Part V Form990ScheduleFPartV (2 entries)
| IdentifierIdentifier | ExplanationExplanation |
|---|---|
| PROCEDURE FOR MONITORING GRANTS OUTSIDE THE U.S.: | SCHEDULE F, 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. |
| METHOD USED TO ACCCOUNT FOR EXPENDITURES: | SCHEDULE F, PART I, LINE 3: CASH |
Schedule G IRS990ScheduleG
| Field | Value | IRS element (for citing) |
|---|---|---|
| Special Fundraising Events | X | SpecialFundraisingEvents |
| Agreement Ref Fundraising | 0 | AgreementRefFundraising |
Fundraiser Activity Information FundraiserActivityInformation
Name Of Organization NameOfOrganization
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | BLUE ROOM EVENTS INC | BusinessNameLine1 |
Address US AddressUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 5777 WEST CENTURY BLVD STE 880 | AddressLine1 |
| City | LOS ANGELES | City |
| State | CA | State |
| ZIP Code | 90045 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Activity | COMEDY FOR A CURE EVENT | Activity |
| Fundraiser Control Of Funds | 0 | FundraiserControlOfFunds |
| Gross Receipts | 182521 | GrossReceipts |
| Amount Retained By Contractor | 16500 | AmountRetainedByContractor |
| Net To Organization | 182521 | NetToOrganization |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Gross Receipts | 182521 | TotalGrossReceipts |
| Total Retained By Contractors | 16500 | TotalRetainedByContractors |
| Total Net To Organization | 182521 | TotalNetToOrganization |
Events Information EventsInformation
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Event1 | WALKS | NameOfEvent1 |
| Gross Receipts Event1 | 1212247 | GrossReceiptsEvent1 |
| Charitable Contributions Event1 | 1212247 | CharitableContributionsEvent1 |
| Other Direct Expenses Event1 | 51638 | OtherDirectExpensesEvent1 |
| Name Of Event2 | LA COMEDY FOR CURE | NameOfEvent2 |
| Gross Receipts Event2 | 198021 | GrossReceiptsEvent2 |
| Charitable Contributions Event2 | 183451 | CharitableContributionsEvent2 |
| Gross Revenue Event2 | 14570 | GrossRevenueEvent2 |
| Other Direct Expenses Event2 | 31850 | OtherDirectExpensesEvent2 |
| Total Number Of Other Events | 0 | TotalNumberOfOtherEvents |
| Gross Receipts Other Events | 219881 | GrossReceiptsOtherEvents |
| Charitable Contrib Other Events | 214981 | CharitableContribOtherEvents |
| Gross Revenue Other Events | 4900 | GrossRevenueOtherEvents |
| Other Direct Expenses Other Events | 26330 | OtherDirectExpensesOtherEvents |
| Gross Receipts Total | 1630149 | GrossReceiptsTotal |
| Charitable Contributions Total | 1610679 | CharitableContributionsTotal |
| Gross Revenue Total Events | 19470 | GrossRevenueTotalEvents |
| Other Direct Expenses Total Events | 109818 | OtherDirectExpensesTotalEvents |
| Direct Expense Summary Events | 109818 | DirectExpenseSummaryEvents |
| Net Income Summary | -90348 | NetIncomeSummary |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Records Maintained | 1 | RecordsMaintained |
Recipient Table RecipientTable (9 entries)
| Address Line1AddressUS/AddressLine1 | CityAddressUS/City | StateAddressUS/State | ZIP CodeAddressUS/ZIPCode | EIN Of RecipientEINOfRecipient | IRC SectionIRCSection | Amount Of Cash GrantAmountOfCashGrant | Purpose Of GrantPurposeOfGrant |
|---|---|---|---|---|---|---|---|
| BRIGHAM & WOMEN'S HOSPITAL | |||||||
| 75 FRANCIS STREET | BOSTON | MA | 02115 | 042312909 | 501(C)(3) | 103102 | CLINCAL TRIALS AND RESEARCH GRANTS |
| VANDERBILT UNIVERSITY MEDICAL CENTER | |||||||
| DEPT OF FINANCE DEPT AT 40303 | ATLANTA | GA | 31192 | 620476822 | 501(C)(3) | 141000 | RESEARCH GRANT |
| UNIVERSITY OF TEXAS | |||||||
| PO BOX 4786-750 | HOUSTON | TX | 77210 | 746000949 | 501(C)(3) | 12066 | RESEARCH GRANT |
| CHILDREN'S HOSPITAL | |||||||
| PO BOX 414413 | BOSTON | MA | 02241 | 042774441 | 501(C)(3) | 271865 | RESEARCH GRANT |
| SEIZURE TRACKER | |||||||
| 4008 RONSON DRIVE | ALEXANDRIA | VA | 22310 | 262311059 | 6000 | RESEARCH GRANT | |
| NEW YORK UNIVERSITY MEDICAL CENTER | |||||||
| 550 1ST AVE | NEW YORK | NY | 10016 | 135562308 | 501(C)(3) | 11499 | RESEARCH GRANT |
| MASSACHUSETTS GENERAL HOSPITAL | |||||||
| PO BOX 414876 | BOSTON | MA | 02241 | 042697983 | 501(C)(3) | 76835 | RESEARCH GRANT |
| CINCINNATI CHILDREN'S HOSPITAL | |||||||
| 3333 BURNET AVE ML 7030 | CINCINNATI | OH | 452293039 | 310833936 | 501(C)(3) | 180960 | RESEARCH GRANT |
| UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER | |||||||
| PO BOX 4786-750 | HOUSTON | TX | 77210 | 746000949 | 501(C)(3) | -40370 | RESEARCH GRANT |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Nbr Of501 C3 And Govt Grants | 8 | TotalNbrOf501C3AndGovtGrants |
| Total Nbr Of Other Organizations | 7 | TotalNbrOfOtherOrganizations |
Form990 Schedule I Part IV Form990ScheduleIPartIV (2 entries)
| IdentifierIdentifier | Return ReferenceReturnReference | ExplanationExplanation |
|---|---|---|
| PROCEDURE FOR MONITORING GRANTS IN THE U.S.: | PART I, LINE 2: | SCHEDULE I, PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $16.5 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 |
| 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 | X | CompensationCommittee |
| Form990 Of Other Organizations | X | Form990OfOtherOrganizations |
| Written Employment Contract | X | WrittenEmploymentContract |
| Compensation Survey | X | CompensationSurvey |
| Board Or Committee Approval | X | BoardOrCommitteeApproval |
| Severance Payment | 0 | SeverancePayment |
| Supplemental Nonqual Retire Plan | 0 | SupplementalNonqualRetirePlan |
| Equity Based Comp Arrangement | 0 | EquityBasedCompArrangement |
| Comp Based On Revenue Of Filing Org | 1 | CompBasedOnRevenueOfFilingOrg |
| Comp Based On Revenue Related Orgs | 0 | CompBasedOnRevenueRelatedOrgs |
| Comp Based Net Earnings Filing Org | 0 | CompBasedNetEarningsFilingOrg |
| Comp Based Net Earnings Relate Orgs | 0 | CompBasedNetEarningsRelateOrgs |
| Any Non Fixed Payments | 0 | AnyNonFixedPayments |
| Initial Contract Exception | 0 | InitialContractException |
Form990 Schedule J Part II Form990ScheduleJPartII (2 entries)
| TitleTitle | Base Compensation Filing OrgBaseCompensationFilingOrg | Comp Based On Related OrgsCompBasedOnRelatedOrgs | Bonus Filing OrgBonusFilingOrg | Bonus Related OrgsBonusRelatedOrgs | Other Compensation Filing OrgOtherCompensationFilingOrg | Other Compensation Related OrgsOtherCompensationRelatedOrgs | Deferred Comp Filing OrgDeferredCompFilingOrg | Deferred Comp Related OrgsDeferredCompRelatedOrgs | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrg | Nontaxable Benefits Related OrgsNontaxableBenefitsRelatedOrgs | Total Compensation Filing OrgTotalCompensationFilingOrg | Total Compensation Related OrgsTotalCompensationRelatedOrgs | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrg | Comp Report Prior990 Related OrgsCompReportPrior990RelatedOrgs |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| KARI L ROSBECK | ||||||||||||||
| PRESIDENT & CEO | 138889 | 13889 | 0 | 0 | 0 | 0 | 4167 | 417 | 26924 | 2692 | 169980 | 16998 | 0 | 0 |
| STEVEN L ROBERDS | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | 158107 | 0 | 0 | 0 | 0 | 0 | 4743 | 0 | 23158 | 0 | 186008 | 0 | 0 | 0 |
Form990 Schedule J Part III Form990ScheduleJPartIII (2 entries)
| Return ReferenceReturnReference | ExplanationExplanation | IdentifierIdentifier |
|---|---|---|
| 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 III | 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. | SUPPLEMENTAL INFORMATION |
Schedule L IRS990ScheduleL
Form990 Schedule L Part IV Form990ScheduleLPartIV
Name Of Interested Person NameOfInterestedPerson
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Person | LISA MOSS | NamePerson |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Relationship | SPOUSE-BOARD MEMBER | Relationship |
| Amount Of Transaction | 50200 | AmountOfTransaction |
| Description Of Transaction | SEE BELOW | DescriptionOfTransaction |
| Sharing Of Revenues | 0 | SharingOfRevenues |
Form990 Schedule L Part V Form990ScheduleLPartV
| Field | Value | IRS element (for citing) |
|---|---|---|
| Explanation | LISA MOSS IS MARRIED TO BOARD MEMBER ROBERT MOSS. MS MOSS WORKED FOR A PORTION OF THE YEAR AS A PART-TIME, INDEPENDENT CONSULTANT ON TWO EVENTS, ART FOR A CURE AND THE NATIONAL WALK ON THE MALL. HER CONSULTING AGREEMENT ENDED IN JUNE 16, 2012. MS. MOSS THEN SUBMITTED AN APPLICATION FOR EMPLOYMENT FOR THE DIRECTOR OF DONOR RELATION POSITION, COMPETING AGAINST OTHER QUALIFIED CANDIDATES. SHE WAS RIGOROUSLY INTERVIEWED BY A SEARCH COMMITTEE, BY THE CEO AND BY A STAFF TEAM. SHE BEGAN FULL-TIME EMPLOYMENT JULY 30, 2012. ROBERT MOSS RESIGNED FROM THE BOARD IN NOVEMBER 2012. | Explanation |
Schedule M IRS990ScheduleM
Other Non Cash Contributions Table OtherNonCashContributionsTable
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | X | NonCashCheckbox |
| Description | SPECIAL EVENT | Description |
| Noncash Contribs Rptd F990 | 28975 | NoncashContribsRptdF990 |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenues |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeld |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGifts |
| Third Parties Used | 0 | ThirdPartiesUsed |
Schedule O IRS990ScheduleO
General Explanation GeneralExplanation (9 entries)
| Return ReferenceReturnReference | ExplanationExplanation | IdentifierIdentifier |
|---|---|---|
| FORM 990, PART VI, SECTION A, LINE 4 | THE TS ALLIANCE MADE SEVERAL REVISIONS TO ITS ORGANIZATIONAL BYLAWS TO REFLECT MINOR CHANGES IN OPERATIONAL PROCEDURES. THE BYLAWS WERE APPROVED BY THE BOARD OF DIRECTORS ON JUNE 13, 2012. | |
| 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 2012: THE FOLLOWING CONFLICTS OF INTEREST WERE DISCLOSED: BOARD MEMBER ROBERT MOSS'S COMPANY SEIZURE TRACKER WAS PAID $6,000 FOR SOFTWARE TO TRACK SEIZURE ACTIVITY. BOARD MEMBER ELIZABETH THIELE, MD, PHD IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL WHICH RECEIVED A $20,000 GRANT FOR THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER ELIZABETH HENSKE, MD IS EMPLOYED AT BRIGHAM AND WOMEN'S HOSPITAL WHICH RECEIVED A RESEARCH GRANT OF $53,602 FOR THE TARGETING AUTOPHAGY & CELLULAR METABOLISM FOR TREATMENT OF TSC PROJECT. | |
| 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 AND UNREALIZED LOSS 236,215. | CHANGES IN NET ASSETS OR FUND BALANCES: |
| FORM 990, PART XI, LINE 2C | THE AUDIT REVIEW PROCESS HAS REMAIN UNCHANGED FROM THE PRIOR YEAR. |
Schedule R IRS990ScheduleR
Form990 Schedule R Part II Form990ScheduleRPartII
Name Of Disregarded Entity NameOfDisregardedEntity
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND | BusinessNameLine1 |
Address US AddressUS
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD 750 | AddressLine1 |
| City | SILVER SPRING | City |
| State | MD | State |
| ZIP Code | 20910 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 521926919 | EIN |
| Primary Activities | TO RECEIVE GIFTS THAT WILL BE INVESTED TO GENERATE PERMANENT INCOME FOR TSA | PrimaryActivities |
| Legal Domicile State | MD | LegalDomicileState |
| Exempt Code Section | 501(C)(3) | ExemptCodeSection |
| Public Charity Status | 509(A)(3) | PublicCharityStatus |
Direct Controlling Entity Name DirectControllingEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL TUBEROUS SCLEROSIS ASSOCIATION (TSA) | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Controlled Org | 0 | ControlledOrg |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Ann Rents Royalties | 0 | ReceiptOfIntAnnRentsRoyalties |
| Gift Grant Or Cap Contr To Other Org | 0 | GiftGrantOrCapContrToOtherOrg |
| Gift Grant Or Cap Contr Fr Other Org | 1 | GiftGrantOrCapContrFrOtherOrg |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrg |
| Loans Or Guarantees From Other Org | 0 | LoansOrGuaranteesFromOtherOrg |
| Dividends Related Organization | 0 | DividendsRelatedOrganization |
| Sale Of Assets To Other Org | 0 | SaleOfAssetsToOtherOrg |
| Purchase Of Assets From Other Org | 0 | PurchaseOfAssetsFromOtherOrg |
| Exchange Of Assets | 0 | ExchangeOfAssets |
| Rental Of Facilities To Other Orgs | 0 | RentalOfFacilitiesToOtherOrgs |
| Rental Of Facilities Fr Other Orgs | 0 | RentalOfFacilitiesFrOtherOrgs |
| Perform Of Services For Other Orgs | 0 | PerformOfServicesForOtherOrgs |
| Perform Of Services By Other Orgs | 0 | PerformOfServicesByOtherOrgs |
| Sharing Of Facilities | 1 | SharingOfFacilities |
| Sharing Of Paid Employees | 1 | SharingOfPaidEmployees |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrg |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrg |
| Other Transfer To Other Org | 0 | OtherTransferToOtherOrg |
| Other Transfer From Other Org | 0 | OtherTransferFromOtherOrg |
Transactions Related Orgs Table TransactionsRelatedOrgsTable
Name Of Other Organization NameOfOtherOrganization
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transaction Type | C | TransactionType |
| Amount Involved | 202000 | AmountInvolved |
| Method Of Amt Determination | CASH | MethodOfAmtDetermination |
Comments