NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2021

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Organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
Tax period
2021-01-01 to 2021-12-31
Filed
2022-04-11
IRS object ID
202241019349300349
Schema version
2021v4.2
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 ReturnHeader

FieldValueIRS element (for citing)
Return2022-04-11T17:00:01-05:00ReturnTs
Tax Period End2021-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

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Preparer Firm EIN420714325PreparerFirmEIN

Preparer Firm Name PreparerFirmName

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Business Name Line1RSM US LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

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Address Line12021 L STREET NW SUITE 400AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20036ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2021-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN953018799EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NATIONAL TUBEROUS SCLEROSIS ASSOCIATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlNATIBusinessNameControlTxt
Phone3015629890PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line18737 COLESVILLE ROAD 400AddressLine1Txt
CitySILVER SPRINGCityNm
State AbbreviationMDStateAbbreviationCd
ZIP20910ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonKARI L ROSBECKPersonNm
Person TitlePRESIDENT & CEOPersonTitleTxt
Phone3015629890PhoneNum
Signature2022-04-08SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstKARIPersonFirstNm
Person LastROSBECKPersonLastNm
FieldValueIRS element (for citing)
SSNXXX-XX-XXXXSSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonELIZABETH W HELLERPreparerPersonNm
PTINP00397829PTIN
Phone2022932200PhoneNum
Preparation2022-04-08PreparationDt

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer3TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2021TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

Doing Business As Name DoingBusinessAsName

FieldValueIRS element (for citing)
Business Name Line1TSC ALLIANCEBusinessNameLine1Txt
FieldValueIRS element (for citing)
Principal OfficerKARI L ROSBECKPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line18737 COLESVILLE ROAD 400AddressLine1Txt
CitySILVER SPRINGCityNm
State AbbreviationMDStateAbbreviationCd
ZIP20910ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$9,061,703GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.TSCALLIANCE.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1975FormationYr
Legal Domicile StateCALegalDomicileStateCd
Activity Or MissionFINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED.ActivityOrMissionDesc
Voting Members Governing Body29VotingMembersGoverningBodyCnt
Voting Members Independent29VotingMembersIndependentCnt
Total Employee22TotalEmployeeCnt
Total Volunteers2234TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$4,345,011PYContributionsGrantsAmt
CY Contributions Grants$5,769,053CYContributionsGrantsAmt
PY Program Service Revenue$792,685PYProgramServiceRevenueAmt
CY Program Service Revenue$2,234,262CYProgramServiceRevenueAmt
PY Investment Income$11,770PYInvestmentIncomeAmt
CY Investment Income$5,670CYInvestmentIncomeAmt
PY Other Revenue-$21,302PYOtherRevenueAmt
CY Other Revenue$1,007,002CYOtherRevenueAmt
PY Total Revenue$5,128,164PYTotalRevenueAmt
CY Total Revenue$9,015,987CYTotalRevenueAmt
PY Grants And Similar Paid$685,788PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$948,236CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$2,382,792PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$2,455,940CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$886,523CYTotalFundraisingExpenseAmt
PY Other Expenses$2,353,610PYOtherExpensesAmt
CY Other Expenses$3,465,386CYOtherExpensesAmt
PY Total Expenses$5,422,190PYTotalExpensesAmt
CY Total Expenses$6,869,562CYTotalExpensesAmt
PY Revenues Less Expenses-$294,026PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$2,146,425CYRevenuesLessExpensesAmt
Total Assets BOY$11,657,873TotalAssetsBOYAmt
Total Assets EOY$14,046,866TotalAssetsEOYAmt
Total Liabilities BOY$2,195,312TotalLiabilitiesBOYAmt
Total Liabilities EOY$2,437,880TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$9,462,561NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$11,608,986NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTHE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, D/B/A TSC ALLIANCE, IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$3,939,485ExpenseAmt
Grant$948,236GrantAmt
Revenue$3,190,730RevenueAmt
DescRESEARCH 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. DIRECTED BY STEVEN L. ROBERDS, PHD, CHIEF SCIENTIFIC OFFICER, THE TSC ALLIANCE RESEARCH PROGRAM BUILDS AND FOSTERS COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS BY COLLECTING AND DISTRIBUTING TSC NATURAL HISTORY DATA AND BIOSAMPLES, THROUGH COLLABORATIVE PRECLINICAL AND CLINICAL RESEARCH PROGRAMS, AND BY HOSTING BIENNIAL INTERNATIONAL TSC RESEARCH CONFERENCES.SINCE 1984, THE TSC ALLIANCE HAS INVESTED $31 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $19.5 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $4.6 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $5.9 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $0.95 MILLION INTO THE CLINICAL RESEARCH CONSORTIUM. GRANT AND FELLOWSHIP APPLICATIONS ARE REVIEWED IN A THREE-STEP PROCESS: (1) ALL APPLICATIONS ARE REVIEWED BY A COMMITTEE COMPRISED OF SCIENTISTS KNOWLEDGEABLE ABOUT THE TOPIC AREA FOR SCIENTIFIC MERIT AND OF CAREGIVERS OR 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 TSC 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. FOR A COMPLETE LIST OF CURRENTLY FUNDED PROJECTS AND AN ARCHIVE OF PAST AWARDEES, PLEASE VISIT TSCALLIANCE.ORG/GRANTS.IMPLEMENTED IN 2006, THE TSC NATURAL HISTORY DATABASE (NHD) CAPTURES CLINICAL DATA TO DOCUMENT THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER THEIR LIFETIME. THE DATABASE SERVES AS A RESOURCE OF INFORMATION THAT HELPS TSC RESEARCHERS BETTER UNDERSTAND THE PROGRESSION OF THE DISEASE, DESIGN HYPOTHESIS-DRIVEN QUESTIONS TO HASTEN THE DISCOVERY OF NEW TREATMENTS AND IDENTIFY PERSONS WITH TSC WHO ARE ELIGIBLE TO PARTICIPATE IN RESEARCH STUDIES. AS OF DECEMBER 2021, 2,357 PEOPLE WITH TSC WERE ENROLLED IN THE PROJECT FROM AMONG 18 U.S.-BASED SITES AND THROUGH THE TSC ALLIANCE. THE TSC 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 2020, THE TSC ALLIANCE ADDED A COVID-19 SUB-PROJECT TO ADDRESS DETAILED QUESTIONS ABOUT COVID-19 INFECTION IN INDIVIDUALS WITH TSC. FOR THIS PROJECT, THE TSC ALLIANCE OPENED THIS NHD SUB-PROJECT UP TO PARTICIPANTS WITH SPORADIC LYMPHANGIOLEIOMYOMATOSIS (S-LAM) IN PARTNERSHIP WITH THE LAM FOUNDATION. IN 2021, THE TSC ALLIANCE EXPANDED THE SUB-PROJECT'S VARIABLES TO INCLUDE ENTRIES FOR COVID-19 VACCINATIONS AND ANTIBODY TESTS. BUILDING UPON THE NATURAL HISTORY DATABASE, THE TSC BIOSAMPLE REPOSITORY IS A TSC ALLIANCE-DIRECTED PROJECT INITIATED IN 2014 THAT WILL IMPACT RESEARCH OVER THE NEXT 10 YEARS OR MORE. THE TSC ALLIANCE'S SCIENCE AND MEDICAL COMMITTEE IDENTIFIED THIS AS A GAP THAT CAN ONLY BE FILLED EFFECTIVELY WITH LEADERSHIP OF THE TSC ALLIANCE, GUIDED BY A STEERING COMMITTEE OF CLINICIANS AND RESEARCHERS. HIGH-QUALITY BIOSAMPLES SUCH AS BLOOD, DNA, AND TISSUES LINKED TO DETAILED CLINICAL DATA ARE CRITICAL FOR RESEARCHERS TO UNDERSTAND WHY TSC IS SO DIFFERENT FROM PERSON TO PERSON. SAMPLES IN THE REPOSITORY ARE LINKED TO DETAILED CLINICAL DATA IN OUR EXISTING TSC NATURAL HISTORY DATABASE AND ARE AVAILABLE TO QUALIFIED RESEARCHERS WORLDWIDE. SAMPLES ARE HOUSED AT AND DISTRIBUTED FROM THE VAN ANDEL INSTITUTE IN GRAND RAPIDS, MI, UNDER CONTROL OF THE TSC ALLIANCE. AS OF DECEMBER 31, 2021, THE TSC BIOSAMPLE REPOSITORY HAS ACQUIRED 2,000 BIOSAMPLES: 615 BLOOD SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 367 BUCCAL SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 154 TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 465 BLOOD SAMPLES FROM THE TSC CLINICAL RESEARCH CONSORTIUM COLLABORATIVE PROJECTS, AND 389 DNA SAMPLES FROM THE TSC AUTISM CENTER OF EXCELLENCE NETWORK AUTISM BIOMARKER STUDY. THE ORGANIZATION CONTINUES TO GROW THE BIOSAMPLE REPOSITORY BY COLLECTING BLOOD SAMPLES ANNUALLY FROM PARTICIPANTS WHO VOLUNTEER TO DO SO, ENABLING RESEARCHERS TO STUDY CHANGES IN PROTEINS AND OTHER MOLECULES IN THE BLOOD OVER TIME; ADDING ADDITIONAL TSC CLINICS AS PARTICIPATING BIOSAMPLE REPOSITORY COLLECTION SITES; AND COLLECTING BLOOD USING MOBILE PHLEBOTOMY, ENABLING PEOPLE TO DONATE SAMPLES REGARDLESS OF WHERE THEY LIVE IN THE US AND WHETHER THEY ARE SEEN AT A TSC CLINIC. SINCE THE INCEPTION OF OUR MOBILE PHLEBOTOMY INITIATIVE, WE HAVE ACQUIRED 187 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. UNIQUE ADDITIONS IN 2021 INCLUDED THE ACQUISITION OF 100 TISSUES FROM THE MARYLAND BRAIN AND TISSUE BANK, FIVE CORD BLOOD SAMPLES FROM INFANTS WITHOUT TSC TO USE AS CONTROLS IN FUTURE EXPERIMENTS FOR THE NEWBORN SCREENING INITIATIVE, AND ONE CORD BLOOD SAMPLE FROM AN INDIVIDUAL WITH TSC. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE FUNDED THREE SEED GRANTS IN 2021, TOTALING $54,940.80, TO LABS THAT SUBMITTED MERITORIOUS AND INNOVATIVE IDEAS FOR RESEARCH ON TSC BIOSAMPLES.IN 2021, THE TSC ALLIANCE COMPLETED A WHOLE-GENOME SEQUENCING (WGS) PILOT STUDY USING DNA FROM BLOOD SAMPLES IN OUR BIOSAMPLE REPOSITORY TO DEMONSTRATE THE FEASIBILITY OF THIS APPROACH. THE TSC ALLIANCE SUBMITTED 20 DNA SAMPLES WHICH HAD NOT BEEN PREVIOUSLY ANALYZED TO THE TRANSLATIONAL GENOMICS RESEARCH INSTITUTE (TGEN) FOR WGS. RESULTS REVEALED DISEASE-CAUSING VARIANTS IN 19 OF 20 SAMPLES AND DEMONSTRATED FEASIBILITY OF WGS TO DELIVER VALUABLE INFORMATION TO BOTH PATIENTS AND RESEARCHERS. WE INTEND TO SCALE UP WGS IN COMING YEARS AS FUNDS ARE RAISED FOR THIS INITIATIVE.IN DECEMBER 2021, THE TSC ALLIANCE ADDED THE TSC SELF-REPORT PORTAL TO THE TSC NATURAL HISTORY DATABASE. THIS NEW PORTAL WILL PERMIT THE COLLECTION OF PATIENT-REPORTED OUTCOMES ON HOW TSC AFFECTS INDIVIDUALS AND FAMILIES, WHICH WILL COMPLEMENT MEDICAL DATA IN THE NATURAL HISTORY DATABASE. THE PURPOSE OF THIS INITIATIVE IS TO HELP THE TSC ALLIANCE AND TSC RESEARCHERS BETTER UNDERSTAND THE PERSPECTIVE OF THOSE AFFECTED BY TSC TO DEVELOP TOOLS TO MEASURE IMPROVEMENT IN AREAS MOST IMPORTANT TO THE TSC COMMUNITY. EVENTUALLY, THESE MEASUREMENTS CAN BE USED TO IDENTIFY ENDPOINTS FOR CLINICAL TRIALS AND EVIDENCE-BASED GUIDELINES FOR TREATMENT.ONE OF THE MOST IMPACTFUL ASPECTS OF TSC ON THE QUALITY OF LIFE FOR PEOPLE LIVING WITH TSC IS TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (TAND). THEREFORE, THE TSC ALLIANCE'S FIRST USE OF THE PORTAL IS THROUGH COLLABORATION WITH THE TANDEM PROJECT (EMPOWERING FAMILIES THROUGH TECHNOLOGY: A MOBILE-HEALTH PROJECT TO REDUCE THE TAND IDENTIFICATION AND TREATMENT GAP) BY ALLOWING THE COMMUNITY TO COMPLETE THE SELF-QUANTIFIED TAND CHECKLIST (TAND-SQ). THE TSC ALLIANCE IS HELPING THE TANDEM PROJECT TEAM VALIDATE THE UTILITY OF THE TAND-SQ FOR FUTURE USE IN A MOBILE APPLICATION.THE TSC ALLIANCE LAUNCHED THE TSC PRECLINICAL CONSORTIUM IN 2015 TO HELP ADVANCE MORE DRUG CANDIDATES INTO CLINICAL TESTING. TO ACHIEVE THIS END, THE PRECLINICAL CONSORTIUM PROVIDES THE INFRASTRUCTURE TO FOSTER COLLABORATION BETWEEN ACADEMIA AND PHARMACEUTICAL INDUSTRY RESEARCHERS AND FOR ACCESS TO RESOURCES DESIGNED TO HELP FACILITATE DRUG DEVELOPMENT IN TSC. COLLABORATING WITH THE TSC COMMUNITY, THE CONSORTIUM HAS IDENTIFIED AND IMPLEMENTED ROBUST AND REPRODUCIBLE CELL AND ANIMAL MODELS FOR TSC MANIFESTATIONS INCLUDING TUMORS, EPILEPSY, AND TAND. THE TSC ALLIANCE HAS LICENSES TO USE SPECIFIC TSC MOUSE MODELS FOR EXPERIMENTS CARRIED OUT BY THE PRECLINICAL CONSORTIUM, AND ALL MOUSE LICENSE AGREEMENTS INCLUDE THE RIGHTS FOR THE TSC ALLIANCE TO PERFORM EXPERIMENTS UNDER CONTRACT FOR COMMERCIAL ENTITIES. THIS ENSURES DATA GENERATED BY THE PRECLINICAL CONSORTIUM CAN BE USED TO ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS BY COMMERCIAL ENTITIES AS WELL AS ACADEMIC INVESTIGATORS. EXPERIMENTS ARE EXECUTED AT PARTNERING RESEARCH INSTITUTIONS TO ENSURE CONSISTENCY IN TESTING, DATA ACQUISITION AND INTERPRETATION. EPILEPSY STUDIES ARE CONDUCTED AT PSYCHOGENICS (US), AND THE TUMOR GRAFT MODEL AND CELL-BASED ASSAYS ARE CONDUCTED AT PORSOLT (FRANCE). THE VAN ANDEL RESEARCH INSTITUTE, A NON-PROFIT RESEARCH ORGANIZATION, MAINTAINS A COLONY OF TSC2+/- AJ MICE AND BREEDING PAIRS OF L7-CRE-TSC2 MICE ON BEHALF OF THE PRECLINICAL CONSORTIUM.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$648,010ExpenseAmt
Grant$0GrantAmt
Revenue$183,500RevenueAmt
DescSUPPORT SERVICES DEVELOPS PROGRAMS AND SERVICES THAT PROVIDE INDIVIDUALS WITH TSC DIRECT ACCESS TO INFORMATION, RESOURCES, AND SPECIALISTS EXPERIENCED IN THE DIAGNOSIS, TREATMENT AND MANAGEMENT OF TSC. IN 2021 THE TSC ALLIANCE FACILITATED 8,742 PEER-TO-PEER SUPPORTS FROM ADULT REGIONAL COORDINATORS (12 VOLUNTEERS IN 8 REGIONS NATIONWIDE), CLINIC AMBASSADORS (16 VOLUNTEERS IN 19 TSC CLINICS AND TSC CENTERS OF EXCELLENCE NATIONWIDE), DEPENDENT ADULT TRANSITION RESOURCE COORDINATORS (31 VOLUNTEERS IN 26 STATES AND PUERTO RICO), EDUCATION PARENT MENTORS (29 VOLUNTEERS IN 21 STATES), AND COMMUNITY ALLIANCE LEADERS (47 VOLUNTEERS IN 33 REGIONS ACROSS THE UNITED STATES) WITH ACTIVE FUTURE LEADERS (8 VOLUNTEERS) AND PAST FUTURE LEADERS (6 VOLUNTEERS) WHO HAVE AGREED TO REMAIN AS LEADERS FOR OTHER YOUNG ADULTS WITH TSC.EDUCATION PARENT MENTORS ATTENDED 55 SCHOOL MEETINGS (IEPS, EVALUATION TEAM MEETINGS, 504 PLAN MEETINGS, RESOLUTION MEETINGS, AND MEDIATIONS) IN PERSON, THROUGH SKYPE/ZOOM, AND VIA CONFERENCE CALLS TO SUPPORT FAMILIES IN ATTAINING EDUCATIONAL SERVICES FOR THEIR CHILDREN THROUGHOUT THE COUNTRY. SEVERAL SCHOOL SYSTEMS ALSO REQUESTED "TSC 101" IN AN EFFORT TO HELP THEM UNDERSTAND THE COMPLEXITIES OF TSC AND LEARNING ISSUES FOR CHILDREN WITH TSC. THE COMMUNITY PROGRAMS TEAM SUPPORTS A NETWORK OF 33 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, THAT PROVIDE SUPPORT AND COMMUNITY EDUCATION IN ALL 50 STATES. TO ENSURE THE TSC COMMUNITY CONTINUE TO RECEIVE UPDATED INFORMATION ABOUT TSC, TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (TAND),TRANSITION AND RESEARCH, THE TSC ALLIANCE DEVELOPED AN E-WEBINAR SERIES. IN 2021, WE HOSTED 27 E-WEBINARS WITH 1,219 CUMULATIVE LIVE ATTENDEES, 5,567 CUMULATIVE RECORDING VIEWS AND 3,123 CUMULATIVE LANDING PAGES VISITS. ADDITIONALLY, WE HELD THE FOLLOWING WEBINARS: APRIL COVID VACCINE TOWN HALL - 66 LIVE ATTENDEES, 304 VIDEO VIEWS; ABC TO SAP WEBINAR - 50 LIVE ATTENDEES, 458 VIDEO VIEWS; AUGUST COVID UPDATE TOWN HALL - 307 LIVE ATTENDEES, 463 VIDEO VIEWS. ADDING IN LIVE ATTENDEES WITH ADDITIONAL WEBINARS TOTAL LIVE AUDIENCE FOR WEBINARS IS 1,642, TOTAL CUMULATIVE RECORDING VIEWS IS 6,636 AND 3,123 CUMULATIVE LANDING PAGE VISITS.IN 2021, THE TSC ALLIANCE LAUNCHED THE TSC NAVIGATOR, AN EASY-TO-USE, INTERACTIVE ONLINE TOOL TO HELP GUIDE INDIVIDUALS AND FAMILIES THROUGH THE COMPLEXITIES OF TSC ACROSS THE LIFESPAN, PROACTIVELY MANAGE THEIR CARE, AND LIVE THEIR FULLEST LIVES. USERS CAN ACCESS INFORMATION BASED ON THE AGE OF ONE'S DIAGNOSIS, SUCH AS PRENATAL, CHILDHOOD, OR ADULT, TO HELP DETERMINE WHICH STEPS WILL HELP EMPOWER THEM THROUGHOUT THEIR INDIVIDUAL JOURNEYS. REGARDLESS OF AGE, TSC NAVIGATOR ALSO HELPS INDIVIDUALS WITH TSC AND THEIR CAREGIVERS FACE COMPLEX SITUATIONS, OVERCOME ACCESS ISSUES, AND ADDRESS INSURANCE BARRIERS. THE TSC NAVIGATOR LAUNCHED OCTOBER 14, 2019 AND RECEIVED MORE THAN 2,700 VISITS BETWEEN LAUNCH AND YEAR END.587 INDIVIDUALS AND FAMILIES WERE ASSISTED DIRECTLY BY THE DIRECTOR OF MEDICAL AFFAIRS AND TEAM ACTING AS SUPPORT NAVIGATORS. OF THE ASSISTANCE PROVIDED, 78 WERE MEDICATION-RELATED, 60 WERE TAND-RELATED, 88 WERE NEW DIAGNOSIS, AND 252 WERE FOR ASSISTANCE WITH ACCESS TO CARE WITH 46 COVID-19 RELATED. THE REMAINDER SERVED A VARIETY OF OTHER NEEDS.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$524,283ExpenseAmt
Grant$0GrantAmt
Revenue$69,500RevenueAmt
DescPUBLIC HEALTH EDUCATION HEIGHTENS AWARENESS OF TSC THROUGHOUT THE GENERAL PUBLIC TO BROADEN THE SCOPE OF SUPPORT AND UNDERSTANDING BEYOND TSC INDIVIDUALS AND THEIR FAMILIES. ONE MAJOR PROJECT IN 2021 WAS CHANGING THE ORGANIZATION'S NAME TO TSC ALLIANCE, WHICH WAS FORMALLY ANNOUNCED SUNDAY, MAY 16.DURING 2021, THE TSC ALLIANCE ALSO PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 17,900 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED 12 EPISODES WITH 2,186 DOWNLOADS. SIX ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 1,340 SUBSCRIBERS. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH AN AVERAGE OF MORE THAN 24,000 UNIQUE VISITORS EACH MONTH. THE TSC ALLIANCE ALSO RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS PRIVATE FACEBOOK TSC DISCUSSION GROUP BOASTS MORE THAN 10,000 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 2,579 FOLLOWERS AND INSTAGRAM HAS 2,762 FOLLOWERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE SEVENTH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE ALSO HEAVILY PROMOTED THE INAUGURAL SEIZURE ACTION PLAN AWARENESS WEEK (FEBRUARY 8-14) AND INFANTILE SPASMS AWARENESS WEEK (DECEMBER 1 TO 7). THESE AWARENESS CAMPAIGNS ALONG WITH THE ORGANIZATIONS VARIOUS NEWS RELEASES CULMINATED IN MORE THAN 1 BILLION CUMULATIVE IMPRESSIONS.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$353,569ExpenseAmt
Revenue$34,070RevenueAmt
DescGOVERNMENT RELATIONS EFFORTS FOCUS ON INCREASING FEDERAL AND STATE APPROPRIATIONS FOR TSC RESEARCH, RAISING AWARENESS, AND COLLABORATING WITH GOVERNMENT PARTNERS TO DRIVE TSC RESEARCH FORWARD AND IMPROVE CLINICAL CARE AND TREATMENT OPTIONS FOR INDIVIDUALS WITH TSC. ON THE STATE LEVEL, THE TSC ALLIANCE ADVOCATED FOR STATE FUNDING FOR TSC CENTERS IN MISSOURI AND MARYLAND, RESULTING IN AT LEAST $750,000 IN STATE APPROPRIATIONS. THE ANNUAL TSC ALLIANCE MARCH ON CAPITOL HILL TO ADVOCATE FOR FEDERAL FUNDING FOR THE TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM (TSCRP) AT THE DEPARTMENT OF DEFENSE'S (DOD) CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) TOOK PLACE IN EARLY MARCH 2021. MORE THAN 135 PEOPLE PARTICIPATED IN THE VIRTUAL MARCH ON CAPITOL HILL THE WEEK OF MARCH 1-5, 2021. ADVOCATES MADE VIRTUAL APPOINTMENTS WITH 75 SENATE AND 280 HOUSE OFFICES TO ADVOCATE FOR A CONTINUATION OF $8 MILLION IN FUNDING FOR THE TSCRP. THE HOUSE TSCRP DEAR COLLEAGUE LETTER SPONSORED BY REPRESENTATIVES MULLIN (R-OK) AND RASKIN (D-MD) CLOSED WITH 202 SIGNERS. THE SENATE LETTER SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) CLOSED WITH 34 SIGNERS. TOTAL FUNDING FOR THE TSCRP HAS BEEN $105 MILLION SINCE 2002. PRESIDENT BIDEN JUST SIGNED THE FY22 DEFENSE BILL INTO LAW ON MARCH 15, 2022, WHICH INCLUDED $8 MILLION FOR THE TSCRP.RESEARCH PERFORMED 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; 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, CALLED 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. DATA OBTAINED FROM AN FY2010 TSCRP CLINICAL RESEARCH AWARD TO DEFINE EARLY AUTISM PREDICTORS IN TSC AND AN FY2014 TSCRP AWARD FOR A PILOT CLINICAL TRIAL IS BEING TESTED IN A LARGE, NIH-FUNDED CLINICAL TRIAL LOOKING AT THE EFFECTIVENESS OF A BEHAVIORAL INTERVENTION STRATEGY, JASPER, TO IMPROVE OUTCOMES IN CHILDREN WITH AUTISM. THE TSCRP HAS ALSO FUNDED RESEARCH TO DEVELOP ANIMAL MODELS OF TSC THAT HAVE SEIZURES, ENABLING A BETTER UNDERSTANDING OF THE ETIOLOGY OF TSC. BASED ON DATA FROM TSCRP-FUNDED ANIMAL MODELS OF TSC THAT HAVE SEIZURES AND SHARE PATHOLOGY RELATED TO THAT OF TRAUMATIC BRAIN INJURY, AN INDUSTRY-SPONSORED CLINICAL TRIAL DEMONSTRATED THE EFFECTIVENESS THE MTOR INHIBITOR, EVEROLIMUS, AT TREATING EPILEPSY IN MANY INDIVIDUALS WITH TSC. NONE OF THIS PROGRESS WOULD HAVE BEEN POSSIBLE WITHOUT THE CRITICAL SUPPORT PROVIDED THROUGH THE TSCRP.GLOBAL OUTREACH WORKS TO ADDRESS UNMET NEEDS WITHIN THE GLOBAL TSC COMMUNITY. THE PROGRAM PROVIDES THE OPPORTUNITY FOR THE TSC ALLIANCE TO SHARE EXPERIENCES AND ASSIST IN THE START-UP OF SUPPORT OF TSC-RELATED ORGANIZATIONS IN OTHER COUNTRIES. A GLOBAL ALLIANCE IS A STRUCTURED GROUP OF EMPOWERED AND CARING VOLUNTEERS WHO WORK CLOSELY WITH THE TSC ALLIANCE TO FACILITATE LOCAL CONNECTIONS FOR INDIVIDUALS AND FAMILIES AFFECTED BY TSC AND RAISE REVENUE AND AWARENESS WHILE SUPPORTING THE MISSION OF THE ORGANIZATION. THE TSC ALLIANCE HAS SIX GLOBAL PARTNERSHIPS, INCLUDING: TSC ALLIANCE OF ISRAEL, TS CANADA ST, TSC ALLIANCE OF MEXICO, TSC ALLIANCE FOUNDATION (IN THAILAND), HUNGARIAN FOUNDATION FOR TUBEROUS SCLEROSIS, AND TSC ALLIANCE OF INDIA. THE TSC ALLIANCE RECOGNIZES 10 TSC CLINICS IN GLOBAL ALLIANCE COUNTRIES. 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. IN AUGUST, TWO NEW PUBLICATIONS WERE ACCEPTED BY PEDIATRIC NEUROLOGY, "UPDATED INTERNATIONAL TSC DIAGNOSTIC CRITERIA AND SURVEILLANCE AND MANAGEMENT RECOMMENDATIONS AND "BEYOND THE GUIDELINES: HOW WE CAN IMPROVE HEALTHCARE FOR PEOPLE WITH TSC AROUND THE WORLD." THE NEW PAPERS PROVIDE THE FIRST SIGNIFICANT UPDATES TO THE INTERNATIONAL GUIDELINES SINCE 2013 BECAUSE OF NEW MEDICATIONS AND ADVANCES IN TREATMENTS. TO ADDRESS THE CHANGES, A WORKING GROUP LED BY DARCY A. KRUEGER, MD, PHD, OF CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER, AND HOPE NORTHRUP, MD, MCGOVERN MEDICAL SCHOOL, UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON, INCLUDED 80 PARTICIPANTS FROM 16 COUNTRIES.THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 37 PROFESSIONAL MEETINGS IN 2021 INCLUDING CURING THE EPILEPSIES 2020: SETTING RESEARCH PRIORITIES, NIMH 2021 VIRTUAL WORKSHOP: GENE-BASED THERAPEUTICS FOR RARE NEURODEVELOPMENTAL PSYCHIATRIC DISORDERS, TSC ALLIANCE: NEWBORN SCREENING WORKSHOP, ATS BOARD OF DIRECTORS MEETING, RARE DISEASE DAY AT NIH, ISAN MEMBERSHIP MEETING, INAUGURAL O'DONNELL BRAIN INSTITUTE SYMPOSIUM ON AUTISM SPECTRUM DISORDERS, OVERCOMING BARRIERS TO DIVERSIFYING CLINICAL TRIALS (RDCRN), ELHS SPRING LEARNING SESSION, HEALTH RESEARCH ALLIANCE CULTURAL COMPETENCY WORKSHOP WITH BME, RESEARCH!AMERICA ANNUAL MEETING OF THE MEMBERS, MEDICAID AND CHIP PAYMENT AND ACCESS COMMISSION (MACPAC) WEBINAR, ICARE MEETING, TRANS-NIH MEETING, ATS PAR MEET-THE-EXPERTS PATIENT/FAMILY FORUM, ATS SCIENTIFIC SYMPOSIUM, USF DIVERSITY, EQUITY, AND INCLUSION IN THE WORKPLACE SERIES, ISAN MEMBERSHIP MEETING-SUMMER, GLOBAL GENES RARE DRUG DEVELOPMENT SYMPOSIUM: PRECLINICAL MODELING-WHAT ADVOCATES NEED TO KNOW ABOUT ANIMAL & CELL MODELS, INTERNATIONAL TSC RESEARCH CONFERENCE-UK, RARE DISEASE PATIENT-FOCUSED DRUG DEVELOPMENT (PFDD) GUIDANCE COMPENDIUM, GLOBAL GENES ACCESS WORKING GROUP LUNCH BRIEFING: MEDICAID COVERAGE FOR GENOMIC SEQUENCING, NINDS NONPROFIT FORUM ADVISORY BOARD MEETING-INDUSTRY PARTNER, GLOBAL GENES: ACCESS WORKING GROUP, LGS FOUNDATION MEETING OF THE MINDS, EVERYLIFE VIRTUAL NEWBORN SCREENING BOOTCAMP, CNF SYMPOSIUM (WITHIN CNS), RDCRN FALL MEETING, NIAMS, BIO, VIRTUAL INTERNATIONAL TSC & LAM RESEARCH CONFERENCE, ATS PAR ANNUAL PLANNING MEETING, TSCI VIRTUAL WORKSHOP, TSCRP PROGRAMMATIC REVIEW & VISION SETTING, AMERICAN EPILEPSY SOCIETY ANNUAL MEETING, AND INFANTILE SPASMS ACTION NETWORK MEMBERS MEETING.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$353,569TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Revenue$34,070TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$5,465,347TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi EndowmentsYes (1)DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other AssetsYes (1)ReportOtherAssetsInd
Report Other LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt0IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtYes (1)ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash ContriYes (1)DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related EntityYes (1)RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document31IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee22EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo ContributionsYes (1)QuidProQuoContributionsInd
Quid Pro Quo Contri DisclYes (1)QuidProQuoContriDisclInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members29GoverningBodyVotingMembersCnt
Independent Voting Member29IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or StockholdersYes (1)MembersOrStockholdersInd
Election Of Board MembersYes (1)ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local ChaptersYes (1)LocalChaptersInd
Policies Reference ChaptersYes (1)PoliciesReferenceChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldINStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Other WebsiteYes (X)OtherWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE ORGANIZATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone3015629890PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line18737 COLESVILLE ROAD 400AddressLine1Txt
CitySILVER SPRINGCityNm
State AbbreviationMDStateAbbreviationCd
ZIP20910ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (37 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtAverage Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtKey EmployeeKeyEmployeeIndHighest Compensated EmployeeHighestCompensatedEmployeeInd
PETER CRINO MD PHD
CHAIR5.000.00Yes (X)Yes (X)$0$0$0
WILLIAM JOSEPH
VICE CHAIR5.001.00Yes (X)Yes (X)$0$0$0
CHRIS RUSSELL
IMMEDIATE PAST CHAIR5.000.00Yes (X)Yes (X)$0$0$0
LAURA MARKS
SECRETARY5.000.00Yes (X)Yes (X)$0$0$0
PAUL WAXLAX
TREASURER5.001.00Yes (X)Yes (X)$0$0$0
DEREK BAUER
BOARD MEMBER2.000.00Yes (X)$0$0$0
JULIE BLUM
BOARD MEMBER2.000.00Yes (X)$0$0$0
MATT BOLGER
BOARD MEMBER2.000.00Yes (X)$0$0$0
EDWARD BURKHALTER
BOARD MEMBER2.000.00Yes (X)$0$0$0
MARK CARROLL
BOARD MEMBER2.000.00Yes (X)$0$0$0
SARAH CHIEFFO
BOARD MEMBER2.000.00Yes (X)$0$0$0
DAVID COIT
BOARD MEMBER2.000.00Yes (X)$0$0$0
MARGARET COX
BOARD MEMBER2.000.00Yes (X)$0$0$0
TIMOTHY DILLS
BOARD MEMBER2.000.00Yes (X)$0$0$0
BONNIE HOGUE DUFFY
BOARD MEMBER2.000.00Yes (X)$0$0$0
TANJALA GIPSON
BOARD MEMBER2.000.00Yes (X)$0$0$0
STEVEN GOLDSTEIN
BOARD MEMBER2.000.00Yes (X)$0$0$0
ROBERT GRANDIA
BOARD MEMBER2.000.00Yes (X)$0$0$0
DANA HOLINKA
BOARD MEMBER2.000.00Yes (X)$0$0$0
JESSICA KREFTING
BOARD MEMBER2.000.00Yes (X)$0$0$0
DARCY KRUEGER
BOARD MEMBER2.000.00Yes (X)$0$0$0
HEATHER LENS
BOARD MEMBER2.000.00Yes (X)$0$0$0
JIM MAGINN
BOARD MEMBER2.000.00Yes (X)$0$0$0
DIANE MCSWAIN
BOARD MEMBER2.000.00Yes (X)$0$0$0
MUSTAFA SAHIN
BOARD MEMBER2.001.00Yes (X)$0$0$0
SEAN SHILLINGER
BOARD MEMBER2.000.00Yes (X)$0$0$0
MATTHEW SIMONIAN
BOARD MEMBER2.000.00Yes (X)$0$0$0
VANESSA VAZQUEZ
BOARD MEMBER2.000.00Yes (X)$0$0$0
TARA ZIMMERMAN
BOARD MEMBER2.000.00Yes (X)$0$0$0
KARI L ROSBECK
PRESIDENT & CEO54.001.00Yes (X)$214,608$3,974$33,232
RICHARD GOLLUB
CFO47.003.00Yes (X)$156,734$10,004$32,878
STEVEN L ROBERDS
CHIEF SCIENTIFIC OFFICER45.000.00$228,854$0$26,998Yes (X)
DEAN RAGER-AGUIAR
DIRECTOR, PRECLINICAL RESEARCH45.000.00$163,695$0$32,110Yes (X)
JAYE D ISHAM
VP, COMMUNICATIONS STRATEGY45.000.00$121,765$0$4,244Yes (X)
LISA M MOSS
SR. DIRECTOR, DONOR RELATIONS45.000.00$109,646$0$26,893Yes (X)
APRIL COOPER
DIRECTOR, COMMUNITY PROGRAMS45.000.00$108,589$0$3,418Yes (X)
ASHLEY POUNDERS
DIRECTOR, MEDICAL AFFAIRS45.000.00$101,208$0$11,671Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,205,099TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$13,978TotReportableCompRltdOrgAmt
Total Other Compensation$171,444TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K8IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (3 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
PSYCHOGENICS INC
20 GRAMERCY PARK SOUTHNEW YORKNY10003RESEARCH LAB SERVICES$1,564,533
VAN ANDEL RESEARCH INSTITUTE
333 BOSTWICK AVE NEGRAND RAPIDSMI49503LABORATORY SERVICES$227,915
CAVAROCCHI RUSCIO DENNIS AND ASSOCIATES
600 MARYLAND AVE SWWASHINGTONDC20024GOVERNMENT RELATIONS$112,980
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K3CntrctRcvdGreaterThan100KCnt
Federated Campaigns$50,596FederatedCampaignsAmt
Membership Dues$4,132MembershipDuesAmt
Fundraising$955,330FundraisingAmt
Related Organizations$226,000RelatedOrganizationsAmt
All Other Contributions$4,532,995AllOtherContributionsAmt
Noncash Contributions$285,267NoncashContributionsAmt
Total Contributions$5,769,053TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
CONTRACT REVENUE900099$2,120,485$2,120,485
CONFERENCE REVENUE900099$113,777$113,777
FieldValueIRS element (for citing)
Total Program Service Revenue$2,234,262TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$3,809TotalRevenueColumnAmt
Exclusion$3,809ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$1,861SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$0SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$1,861SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,861TotalRevenueColumnAmt
Exclusion$1,861ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$234,482FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$955,330ContriRptFundraisingEventAmt
Fundraising Direct Expenses$45,716FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$188,766TotalRevenueColumnAmt
Exclusion$188,766ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescCHANGE INT-ENDOWMENTDesc
Business900099BusinessCd
Total Revenue Column$818,236TotalRevenueColumnAmt
Exclusion$818,236ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$818,236OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$9,015,987TotalRevenueColumnAmt
Related Or Exempt Func Income$2,234,262RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$1,012,672ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$833,329TotalAmt
Program Services$833,329ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$114,907TotalAmt
Program Services$114,907ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$797,701TotalAmt
Program Services$489,000ProgramServicesAmt
Management And General$223,016ManagementAndGeneralAmt
Fundraising$85,685FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,242,312TotalAmt
Program Services$792,478ProgramServicesAmt
Management And General$103,838ManagementAndGeneralAmt
Fundraising$345,996FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$275,780TotalAmt
Program Services$173,018ProgramServicesAmt
Management And General$38,279ManagementAndGeneralAmt
Fundraising$64,483FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$140,147TotalAmt
Program Services$87,925ProgramServicesAmt
Management And General$19,453ManagementAndGeneralAmt
Fundraising$32,769FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$38,838TotalAmt
Program Services$25,875ProgramServicesAmt
Management And General$10,766ManagementAndGeneralAmt
Fundraising$2,197FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$26,179TotalAmt
Management And General$26,179ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$112,980TotalAmt
Program Services$112,980ProgramServicesAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$369,033TotalAmt
Program Services$228,093ProgramServicesAmt
Management And General$16,900ManagementAndGeneralAmt
Fundraising$124,040FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$24,836TotalAmt
Program Services$24,608ProgramServicesAmt
Fundraising$228FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$256,679TotalAmt
Program Services$140,716ProgramServicesAmt
Management And General$8,501ManagementAndGeneralAmt
Fundraising$107,462FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$172,599TotalAmt
Program Services$90,501ProgramServicesAmt
Management And General$20,808ManagementAndGeneralAmt
Fundraising$61,290FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$128,139TotalAmt
Program Services$80,284ProgramServicesAmt
Management And General$17,669ManagementAndGeneralAmt
Fundraising$30,186FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$13,890TotalAmt
Program Services$8,415ProgramServicesAmt
Management And General$1,692ManagementAndGeneralAmt
Fundraising$3,783FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$76,847TotalAmt
Program Services$76,630ProgramServicesAmt
Management And General$55ManagementAndGeneralAmt
Fundraising$162FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$73,200TotalAmt
Program Services$50,381ProgramServicesAmt
Management And General$6,465ManagementAndGeneralAmt
Fundraising$16,354FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$11,222TotalAmt
Program Services$7,040ProgramServicesAmt
Management And General$1,558ManagementAndGeneralAmt
Fundraising$2,624FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
PRECLINICAL CONSORTIUM$1,824,180$1,824,180
NHD BIOSAMPLE REPOSIT$266,285$266,285
DUES AND SUBSCRIPTIONS$48,878$29,979$12,767$6,132
MISCELLANEOUS EXPENSES$8,527$3,443$3,848$1,236

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$13,074TotalAmt
Program Services$5,280ProgramServicesAmt
Management And General$5,898ManagementAndGeneralAmt
Fundraising$1,896FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$6,869,562TotalAmt
Program Services$5,465,347ProgramServicesAmt
Management And General$517,692ManagementAndGeneralAmt
Fundraising$886,523FundraisingAmt
FieldValueIRS element (for citing)
Joint CostsYes (X)JointCostsInd

Total Joint Costs TotalJointCostsGrp

FieldValueIRS element (for citing)
Total$33,150TotalAmt
Program Services$16,575ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$16,575FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,097,500BOYAmt
EOY$1,459,324EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,238,876BOYAmt
EOY$1,242,438EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$1,578,285BOYAmt
EOY$2,698,495EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$113,491BOYAmt
EOY$99,173EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$392,003BOYAmt
EOY$620,148EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$719,159LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$281,990LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$510,367BOYAmt
EOY$437,169EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$6,727,351BOYAmt
EOY$7,490,119EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$11,657,873BOYAmt
EOY$14,046,866EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$435,478BOYAmt
EOY$472,049EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$422,226BOYAmt
EOY$676,798EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,337,608BOYAmt
EOY$1,289,033EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$2,195,312BOYAmt
EOY$2,437,880EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$5,954,477BOYAmt
EOY$6,580,605EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$3,508,084BOYAmt
EOY$5,028,381EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$9,462,561BOYAmt
EOY$11,608,986EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$11,657,873BOYAmt
EOY$14,046,866EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$2,146,425ReconcilationRevenueExpnssAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Consolidated Basis Fincl StmtYes (X)ConsolidatedBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,949,953CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,105,376CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$5,527,543CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,345,011CurrentTaxYearMinus1YearAmt
Current Tax Year$5,769,053CurrentTaxYearAmt
Total$23,696,936TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,949,953CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,105,376CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$5,527,543CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,345,011CurrentTaxYearMinus1YearAmt
Current Tax Year$5,769,053CurrentTaxYearAmt
Total$23,696,936TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$3,559,289SubstantialContributorsTotAmt
Public Support Total170$20,137,647PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$10,393CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$13,784CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$27,444CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$11,188CurrentTaxYearMinus1YearAmt
Current Tax Year$3,809CurrentTaxYearAmt
Total$66,618TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$642CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,243CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$714CurrentTaxYearMinus2YearsAmt
Total$2,599TotalAmt
FieldValueIRS element (for citing)
Total Support$23,766,153TotalSupportAmt
Gross Receipts Rltd Activities$10,327,170GrossReceiptsRltdActivitiesAmt
Public Support CY1700.84730PublicSupportCY170Pct
Public Support PY1700.84300PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Form990 Schedule A Part VI Form990ScheduleAPartVIGrp

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME:FormAndLineReferenceDesc
ExplanationINCOME FROM ACTIVITIES NOT REGULARLY CARRIED ON - 2017 AMOUNT: $ 642. 2018 AMOUNT: $ 1,243. 2019 AMOUNT: $ 714.ExplanationTxt

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule C IRS990ScheduleC

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$1,127FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$153,012FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$154,139FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$6,795,167FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$6,949,306FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$497,465FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$124,366FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$450,555CurrentYearMinus3Amt
Current Year Minus2$445,393CurrentYearMinus2Amt
Current Year Minus1$423,685CurrentYearMinus1Amt
Current Year$497,465CurrentYearAmt
Total$1,817,098TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$2,725,647LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$149,340CurrentYearMinus3Amt
Current Year Minus2$165,226CurrentYearMinus2Amt
Current Year Minus1$123,014CurrentYearMinus1Amt
Current Year$154,139CurrentYearAmt
Total$591,719TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$112,639CurrentYearMinus3Amt
Current Year Minus2$111,348CurrentYearMinus2Amt
Current Year Minus1$105,921CurrentYearMinus1Amt
Current Year$124,366CurrentYearAmt
Total$454,274TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$681,411GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$823CurrentYearMinus3Amt
Current Year Minus2$2,491CurrentYearMinus2Amt
Current Year Minus1$895CurrentYearMinus1Amt
Current Year$1,127CurrentYearAmt
Total$5,336TotalAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$5,893,521BeginningYearBalanceAmt
Contributions$132,476ContributionsAmt
Investment Earnings Or Losses$1,053,588InvestmentEarningsOrLossesAmt
Other Expenditures$333,813OtherExpendituresAmt
Administrative Expenses$34,024AdministrativeExpensesAmt
End Year Balance$6,711,748EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$5,915,805BeginningYearBalanceAmt
Contributions$54,645ContributionsAmt
Investment Earnings Or Losses$416,431InvestmentEarningsOrLossesAmt
Other Expenditures$463,721OtherExpendituresAmt
Administrative Expenses$29,639AdministrativeExpensesAmt
End Year Balance$5,893,521EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$5,193,934BeginningYearBalanceAmt
Contributions$78,962ContributionsAmt
Investment Earnings Or Losses$959,121InvestmentEarningsOrLossesAmt
Other Expenditures$288,356OtherExpendituresAmt
Administrative Expenses$27,856AdministrativeExpensesAmt
End Year Balance$5,915,805EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$5,655,555BeginningYearBalanceAmt
Contributions$82,346ContributionsAmt
Investment Earnings Or Losses-$439,321InvestmentEarningsOrLossesAmt
Other Expenditures$50,000OtherExpendituresAmt
Administrative Expenses$54,646AdministrativeExpensesAmt
End Year Balance$5,193,934EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$5,293,989BeginningYearBalanceAmt
Contributions$92,635ContributionsAmt
Investment Earnings Or Losses$739,072InvestmentEarningsOrLossesAmt
Other Expenditures$403,000OtherExpendituresAmt
Administrative Expenses$67,141AdministrativeExpensesAmt
End Year Balance$5,655,555EndYearBalanceAmt
FieldValueIRS element (for citing)
Board Designated Balance EOY0.84560BoardDesignatedBalanceEOYPct
Prmnnt Endowment Balance EOY0.13100PrmnntEndowmentBalanceEOYPct
Term Endowment Balance EOY0.02340TermEndowmentBalanceEOYPct
Endowments Held Unrelated Org0EndowmentsHeldUnrelatedOrgInd
Endowments Held Related OrgYes (1)EndowmentsHeldRelatedOrgInd
Related Org List Sch RYes (1)RelatedOrgListSchRInd

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$449,272OtherCostOrOtherBasisAmt
Depreciation$71,475DepreciationAmt
Book Value$377,797BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$189,615OtherCostOrOtherBasisAmt
Depreciation$134,797DepreciationAmt
Book Value$54,818BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$80,272OtherCostOrOtherBasisAmt
Depreciation$75,718DepreciationAmt
Book Value$4,554BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$437,169TotalBookValueLandBuildingsAmt

Other Assets Org OtherAssetsOrgGrp (2 entries)

DescDescBook ValueBookValueAmt
INTEREST IN NET ASSETS OF AFFILIATE$6,711,748
OPERATING LEASE RIGHT-OF-USE ASSET$778,371
FieldValueIRS element (for citing)
Total Book Value Other Assets$7,490,119TotalBookValueOtherAssetsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDescAmtAmt
DEFERRED RENT & LEASE INCENTIVE$1,285,691
DUE TO AFFILIATE$3,342
FieldValueIRS element (for citing)
Total Liability$1,289,033TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt$9,050,015TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts$34,028DonatedServicesAndUseFcltsAmt
Revenue Not Reported$34,028RevenueNotReportedAmt
Revenue Subtotal$9,015,987RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$9,015,987TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$6,903,590TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$34,028DonatedServicesUseFcltsAmt
Expenses Not Reported$34,028ExpensesNotReportedAmt
Expenses Subtotal$6,869,562ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$6,869,562TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART V, LINE 4:FormAndLineReferenceDesc
ExplanationTHE 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.ExplanationTxt

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmtSpecific Services ProvidedSpecificServicesProvidedTxt
EUROPE (INCLUDING ICELAND & GREENLAND)00GRANTMAKING$19,907
MIDDLE EAST AND NORTH AFRICA00GRANTMAKING$75,000
EUROPE (INCLUDING ICELAND & GREENLAND)00PROGRAM SERVICE ACTIVITIES$4,177PRECLINICAL RESEARCH STUDIES
NORTH AMERICA00GRANTMAKING$20,000
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$119,084SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$119,084TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtNon Cash AssistanceNonCashAssistanceAmt
MIDDLE EAST AND NORTH AFRICARESEARCH ON TUBEROUS SCLEROSIS COMPLEX$75,000WIRE$0
EUROPE (INCLUDING ICELAND & GREENLAND)PROGRAMMATIC SUPPORT$19,907WIRE$0
NORTH AMERICAGRANTMAKING$20,000CHECK$0
FieldValueIRS element (for citing)
Total501c3 Org0Total501c3OrgCnt
Total Other Org3TotalOtherOrgCnt
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
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 AND IF THE GRANTEE WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES.
PART III ACCOUNTING METHOD:

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1VIRTUAL WALKSEvent1Nm
Gross Receipts Event1$806,174GrossReceiptsEvent1Amt
Charitable Contri Event1$650,809CharitableContriEvent1Amt
Gross Revenue Event1$155,365GrossRevenueEvent1Amt
Non Cash Prizes Event1$20,365NonCashPrizesEvent1Amt
Rent Facility Costs Event1$154RentFacilityCostsEvent1Amt
Event2COMEDY FOR A CUREEvent2Nm
Gross Receipts Event2$142,870GrossReceiptsEvent2Amt
Charitable Contri Event2$100,282CharitableContriEvent2Amt
Gross Revenue Event2$42,588GrossRevenueEvent2Amt
Non Cash Prizes Event2$1,093NonCashPrizesEvent2Amt
Rent Facility Costs Event2$15,891RentFacilityCostsEvent2Amt
Entertainment Event2$1,400EntertainmentEvent2Amt
Other Events Total7OtherEventsTotalCnt
Gross Receipts Other Events$240,768GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$204,239CharitableContriOtherEventsAmt
Gross Revenue Other Events$36,529GrossRevenueOtherEventsAmt
Non Cash Prizes Other Events$2,313NonCashPrizesOtherEventsAmt
Rent Fclty Costs Other Events$4,500RentFcltyCostsOtherEventsAmt
Gross Receipts Total$1,189,812GrossReceiptsTotalAmt
Charitable Contributions Tot$955,330CharitableContributionsTotAmt
Gross Revenue Total Events$234,482GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events$23,771NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events$20,545RentFcltyCostsTotalEventsAmt
Entertainment Total Events$1,400EntertainmentTotalEventsAmt
Direct Expense Summary Events$45,716DirectExpenseSummaryEventsAmt
Net Income Summary$188,766NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (12 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxt
BRIGHAM & WOMEN'S HOSPITAL
75 FRANCIS STREETBOSTONMA02115042312909501(C)(3)$109,963$0RESEARCH GRANTS
UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
5323 HARRY HINES BLVDDALLASTX75287756002868501(C)(3)$18,750$0RESEARCH GRANTS
NATIONAL ORGANIZATION FOR RARE DISORDERS
55 KENOSIA AVENUEDANBURYCT06810133223946501(C)(3)$225,000$0TSC TRAVEL AND LODGING ASSISTANCE PROGRAM
NORTHWESTERN UNIVERSITY
7TH FLOOR RUBLOFF BUILDINGCHICAGOIL60611362167818501(C)(3)$56,250$0RESEARCH GRANTS
CHILDREN'S HOSPITAL CORPORATION
300 LONGWOOD AVENUEBOSTONMA02115042774441501(C)(3)$112,500$0RESEARCH GRANTS
UNIVERSITY OF CALIFORNIA BERKELEY
1608 FOURTH ST STE 220BERKELEYCA94710946002123501(C)(3)$28,125$0RESEARCH GRANT
VANDERBILT UNIVERSITY
1161 21ST AVE SOUTHNASHVILLETN37232352528741501(C)(3)$28,125$0RESEARCH GRANT
UNIVERSITY OF MARYLAND BALTIMORE
PO BOX 41428BALTIMOREMD21203526002033501(C)(3)$18,634$0RESEARCH GRANT
UNIVERSITY OF WASHINGTON
4333 BROOKLYN AVE NE BOX 359472SEATTLEWA98195916001537501(C)(3)$25,000$0RESEARCH GRANT
CHILDREN'S HOSPITAL MEDICAL CENTER
3333 BURNET AVENUECINCINNATIOH45229310833936501(C)(3)$100,000$0CLINICAL RESEARCH
BROWN UNIVERSITY
69 BROWN STREET BOX 1911PROVIDENCERI02912050258809501(C)(3)$55,000$0CLINICAL RESEARCH
BOSTON CHILDREN'S HOSPITAL
PO BOX 414413BOSTONMA022414413042774441501(C)(3)$57,409$0CLINICAL RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org12Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationTHE TSC ALLIANCE HAS FUNDED $31 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D, CHIEF SCIENTIFIC OFFICER, THE TSC ALLIANCE RESEARCH GRANTS PROGRAM FUNDS RESEARCH FOCUSED ON TSC WITH PRIORITIES SET BY THE RESEARCHERS TOGETHER WITH THE TSC ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, AND THE TSC ALLIANCE IS WORKING TO INCREASE FUNDING FOR RESEARCH ON TSC. THROUGH THE TSC ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR POSTDOCTORAL FELLOWSHIPS AND TSC RESEARCH GRANTS. GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: 1. A GRANT REVIEW COMMITTEE COMPOSED OF INDIVIDUALS KNOWLEDGEABLE ABOUT THE CLINICAL AND BASIC COMPONENTS OF TSC AS WELL AS CONSUMERS 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. 2. THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS THEN REVIEWS THE GRANT REVIEW COMMITTEE'S CONCLUSIONS AND MAKES FUNDING RECOMMENDATIONS TO THE BOARD OF DIRECTORS. 3. THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR THE FUNDING OF GRANTS.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Form990 Of Other OrganizationsYes (X)Form990OfOtherOrganizationsInd
Compensation SurveyYes (X)CompensationSurveyInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng OrgYes (1)CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng OrgYes (1)CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
STEVEN L ROBERDS
CHIEF SCIENTIFIC OFFICER$212,421$0$16,175$0$258$0$7,007$0$24,311$0$260,172$0$0$0
KARI L ROSBECK
PRESIDENT & CEO$196,498$3,638$17,866$331$244$5$6,806$0$30,738$0$252,152$3,974$0$0
RICHARD GOLLUB
CFO$146,390$9,344$9,972$636$372$24$5,207$0$32,130$0$194,071$10,004$0$0
DEAN RAGER-AGUIAR
DIRECTOR, PRECLINICAL RESEARCH$157,178$0$6,379$0$138$0$5,180$0$31,130$0$200,005$0$0$0

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART I, LINE 5KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, DEAN AGUIAR, JAYE ISHAM, LISA MOSS AND APRIL COOPER ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE.
PART I, LINE 6KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, DEAN AGUIAR, JAYE ISHAM, LISA MOSS AND APRIL COOPER ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE.

Schedule M IRS990ScheduleM

Books And Publications BooksAndPublicationsGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Noncash Contributions Rpt F990$34,028NoncashContributionsRptF990Amt
Method Of Determining RevenuesFMVMethodOfDeterminingRevenuesTxt

Clothing And Household Goods ClothingAndHouseholdGoodsGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Noncash Contributions Rpt F990$724NoncashContributionsRptF990Amt
Method Of Determining RevenuesFMVMethodOfDeterminingRevenuesTxt

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution7ContributionCnt
Noncash Contributions Rpt F990$250,515NoncashContributionsRptF990Amt
Method Of Determining RevenuesFMVMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Form8283 Received0Form8283ReceivedCnt
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC GiftsYes (1)ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, COLUMN (B):FormAndLineReferenceDesc
ExplanationREPORTING THE NUMBER OF CONTRIBUTIONSExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (8 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART III, LINE 4ATHE PRECLINICAL CONSORTIUM INVITES COMPOUND NOMINATIONS FROM ACADEMIC AND INDUSTRY RESEARCHERS TO CONTINUE TO REFRESH OUR PIPELINE BASED ON THE LATEST DATA AND NOVEL IDEAS. THE NOMINATIONS ARE PEER-REVIEWED BY CONSORTIUM MEMBERS AND PRIORITIZED BY THE PRECLINICAL CONSORTIUM STEERING COMMITTEE FOR FUNDING BY THE TSC ALLIANCE. IF THE TSC ALLIANCE FUNDS THE STUDY, THE DATA ARE SHARED WITH THE CONSORTIUM FOR TRANSPARENCY AND STIMULATION OF ADDITIONAL HYPOTHESES. AN ANNUAL FACE-TO-FACE MEMBERS MEETING IS TYPICALLY HELD EACH YEAR IN APRIL TO KEEP MEMBERS ENGAGED AND ALIGNED ON THE CONSORTIUM'S STRATEGY AND PRIORITIES. PARTNERSHIP WITH PHARMACEUTICAL COMPANIES IS AN IMPORTANT ASPECT OF THE CONSORTIUM, AS THESE ORGANIZATIONS HAVE THE INFRASTRUCTURE TO EFFICIENTLY MOVE PRECLINICAL RESEARCH FINDINGS TO CLINICAL TESTING AND EVENTUALLY COMMERCIAL DISTRIBUTION. AS OF DECEMBER 2021, 10 COMPANIES WERE ACTIVE MEMBERS OF THE CONSORTIUM. THE CONSORTIUM HAS HAD 17 COMPANY MEMBERS SINCE 2016. THERE IS NATURAL TURNOVER OF INDUSTRY MEMBERSHIP, PRINCIPALLY DRIVEN BY RESEARCH DATA GENERATED BY TESTING THEIR DRUGS. DUE TO INTELLECTUAL PROPERTY CONSIDERATIONS, MOST COMPANIES FULLY FUND THEIR STUDIES THROUGH THE TSC ALLIANCE, WHICH ALLOWS THE COMPANY TO KEEP ITS DATA CONFIDENTIAL. THESE CONFIDENTIAL STUDIES ALSO INCUR A 10% OVERHEAD PAID BY THE COMPANY, WHICH IS A SOURCE OF REVENUE FOR THE TSC ALLIANCE. SINCE INCEPTION, THE CONSORTIUM HAS HELPED ADVANCE THE EVALUATION OF DRUGS FOR TSC BY CONDUCTING 90 STUDIES, EVALUATING 57 CANDIDATE DRUGS. IN 2020, THE TSC PRECLINICAL CONSORTIUM EVALUATED 9 CANDIDATE COMPOUNDS AND CONDUCTED 22 EXPERIMENTS. IN 2012, THE TSC ALLIANCE HELPED CREATE THE TSC CLINICAL RESEARCH CONSORTIUM IN PARTNERSHIP WITH INVESTIGATORS RUNNING CLINICAL STUDIES TO ENSURE CLINICAL RESEARCH IN TSC IS AS EFFICIENT AND EFFECTIVE AS POSSIBLE. SINCE THEN, TSC CLINICAL RESEARCH CONSORTIUM INVESTIGATORS HAVE BEEN AWARDED MORE THAN $39 MILLION BY THE NATIONAL INSTITUTES OF HEALTH (NIH) AND FOOD AND DRUG ADMINISTRATION (FDA) THROUGH COMPETITIVE GRANT PROCESSES. TSC ALLIANCE PERSONNEL SERVE ON THE LEADERSHIP TEAM FOR THE CONSORTIUM, ACTIVELY TRACK ENROLLMENT, AND RAISE COMMUNITY AWARENESS TO HELP IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL STUDIES. TSC ALLIANCE ALSO PROVIDES SUPPLEMENTAL FINANCIAL SUPPORT TO ACCELERATE OR EXPAND NIH-FUNDED STUDIES. THE PREVENT TRIAL - PREVENTING EPILEPSY USING VIGABATRIN IN INFANTS WITH TSC - IS THE FIRST PREVENTATIVE TRIAL IN THE UNITED STATES FOR ANY FORM OF EPILEPSY AND HAS COMPLETED ENROLLMENT OF 86 PARTICIPANTS. WE EXPECT THE FIRST RESULTS IN THE FIRST QUARTER OF 2022 AND FINAL RESULTS IN EARLY 2023. THIS TRIAL BUILDS DIRECTLY UPON THE CLINICAL RESEARCH CONSORTIUM'S FIRST CLINICAL STUDY, WHICH IDENTIFIED SPECIFIC EEG CHANGES IN INFANTS WITH TSC PRIOR TO THE ONSET OF SEIZURES. IN THE PREVENT TRIAL, INFANTS WITH TSC RECEIVE REGULAR EEG MONITORING, AND THOSE WHO DEVELOP EEG ABNORMALITIES ARE PLACED ON EITHER VIGABATRIN OR PLACEBO. ANY INFANT WHO SUBSEQUENTLY DEVELOPS CLINICAL SEIZURES IS IMMEDIATELY PLACED ON STANDARD TREATMENT. THIS TRIAL WILL DETERMINE WHETHER TREATMENT WITH VIGABATRIN PRIOR TO THE ONSET OF CLINICAL SEIZURES IN TSC IS BENEFICIAL TO CHILDREN'S DEVELOPMENTAL AND NEUROLOGIC OUTCOMES. MORE DETAILS ABOUT THIS STUDY ARE ONLINE AT WWW.CLINICALTRIALS.GOV/CT2/SHOW/NCT02849457. IMMEDIATELY AFTER THE PREVENT TRIAL ENROLLMENT COMPLETED, A SIMILAR CLINICAL TRIAL BEGAN ENROLLING NEWBORNS WITH TSC BEFORE THE ONSET OF SEIZURES TO TEST THE EFFECTS OF SIROLIMUS ON PREVENTING OR DELAYING SEIZURE ONSET. THE STOPPING TSC ONSET AND PROGRESSION 2 (STOP-2) TRIAL ENROLLED FIVE INFANTS AT CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER AS AN INITIAL SAFETY STUDY. THE SECOND STAGE OF THE TRIAL IS NOW CALLED "SIROLIMUS TSC EPILEPSY PREVENTION STUDY (TSC-STEPS) AND THE TSC ALLIANCE HAS CONTRIBUTED $200,000 TO ENABLE THE TRIAL TO BE EXPANDED TO ADDITIONAL SITES ACROSS THE COUNTRY. THE TSC ALLIANCE IS ALSO PROVIDING SUPPLEMENTAL FUNDING AND COLLECTING BLOOD SAMPLES FOR THE DEVELOPMENTAL SYNAPTOPATHIES CONSORTIUM (DSC), AN NIH-FUNDED PROJECT THAT INCLUDES STUDIES OF TSC AND THE RELATED RARE DISORDERS PHELAN-MCDERMID SYNDROME AND PTEN HAMARTOMA SYNDROME. THESE THREE RARE DISEASES SEEM TO AFFECT CERTAIN SHARED PATHWAYS INFLUENCING THE DEVELOPMENT OF BRAIN CONNECTIONS, OR SYNAPSES. RESEARCHERS IN THIS STUDY ARE TRYING TO FIND EARLIER SIGNS OF AUTISM SPECTRUM DISORDER (ASD) AND INTELLECTUAL DISABILITY (ID) TO GAIN A BETTER UNDERSTANDING OF ASD/ID IN INDIVIDUALS WITH TSC AND ENABLE EFFECTIVE TREATMENTS AND INTERVENTIONS FOR ASD/ID TO BE FOUND. THE DSC WAS RENEWED IN 2019 FOR A SECOND 5-YEAR FUNDING PERIOD. THE TSC ALLIANCE FUNDS A PORTION OF CLINICAL RESEARCH COORDINATORS' SALARIES AT 5 SITES. IN 2021, THE TSC ALLIANCE AWARDED A TWO-YEAR CLINICAL RESEARCH TSC-DSC FELLOWSHIP TO FELIX CHAN, PHD, AT BROWN UNIVERSITY. IN ADDITION TO SPECIFIC COLLABORATIVE PROJECTS DETAILED ABOVE, THE TSC ALLIANCE STIMULATES COLLABORATION AND INNOVATION THROUGH CONVENING EXPERTS AND STAKEHOLDERS WITHIN AND OUTSIDE THE TSC FIELD. IN 2020, THE TSC ALLIANCE INTRODUCED THE CONCEPT OF AN AD HOC INNOVATION WORKSHOP FOCUSED ON A SPECIFIC RESEARCH GAP OR OPPORTUNITY. THE FIRST INNOVATION WORKSHOP TOPIC WAS NEWBORN SCREENING, HELD USING ZOOM AND POWERNOODLE IN LATE 2020 AND CULMINATING IN A ZOOM MEETING ON JANUARY 29, 2021. PARTICIPANTS INCLUDED 20 RESEARCHERS WITH TSC EXPERTISE; 19 RESEARCHERS WITH NEWBORN SCREENING EXPERIENCE FROM CDC, NIH, AND ACADEMIC LABORATORIES; AND FIVE REPRESENTATIVES OF NON-TSC ADVOCACY ORGANIZATIONS WITH NEWBORN SCREENING EXPERIENCE. FOLLOWING PEER-REVIEW BY EXPERTS IN TSC AND SCREENING RESEARCH, THE TSC ALLIANCE FULLY FUNDED TWO PROPOSALS TOTALING $164,856 FOR HYPOTHESIS-DRIVEN RESEARCH IN ASSAY DEVELOPMENT FOR EARLY DETECTION OF TSC. THE 2021 VIRTUAL INTERNATIONAL TSC & LAM RESEARCH CONFERENCE: DRIVING DISCOVERIES BEYOND BOUNDARIES HELD OCTOBER 28-30, 2021, WELCOMED 179 PEOPLE FROM 18 COUNTRIES. CO-SPONSORED BY THE TSC ALLIANCE AND THE LAM FOUNDATION, THE CONFERENCE FEATURED THREE PLENARY SESSIONS WITH 17 ORAL PRESENTATIONS AND TWO POSTER SESSIONS WITH 14 POSTERS. ADDITIONALLY, TWO HALF-DAY SESSIONS OF "TOPIC-BASED DISCUSSION" BROUGHT TOGETHER CLINICAL AND BASIC SCIENCE RESEARCHERS TO DISCUSS CROSS-CUTTING TOPICS, INCLUDING BIG DATA AND CLINICAL TRANSLATION.
FORM 990, PART VITHE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS' AUDIT COMMITTEE. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED, THE AUDIT COMMITTEE VOTES WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE FINANCE AND EXECUTIVE COMMITTEES. THE FINANCE AND EXECUTIVE COMMITTEES PERFORM THE FINAL REVIEW AND THEN VOTE WHETHER TO APPROVE ON BEHALF OF THE BOARD OF DIRECTORS. A COPY OF THE APPROVED 990 IS SHARED WITH THE ENTIRE BOARD PRIOR TO ITS FILING WITH THE IRS.
FORM 990, PART VI, SECTION A, LINE 6MEMBERSHIP 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 7ATHE TSC ALLIANCE IS A MEMBERSHIP-BASED ORGANIZATION, WHICH MEANS MEMBERS HELP ELECT THE BOARD OF DIRECTORS. THE TSC ALLIANCE MEMBERSHIP PROGRAM ALLOWS INDIVIDUALS TO STATE THEIR INTENT TO BE A MEMBER FOR THE PURPOSE OF GOVERNANCE. THERE WERE NO LEVELS TO MEMBERSHIP IN 2021. ANYONE CAN BE A MEMBER AT NO COST.
FORM 990, PART VI, SECTION B, LINE 11BTHE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS' AUDIT COMMITTEE. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED, THE AUDIT COMMITTEE VOTES WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE FINANCE AND EXECUTIVE COMMITTEES. THE FINANCE AND EXECUTIVE COMMITTEES PERFORM THE FINAL REVIEW AND THEN VOTE WHETHER TO APPROVE ON BEHALF OF THE BOARD OF DIRECTORS. A COPY OF THE APPROVED 990 IS SHARED WITH THE ENTIRE BOARD PRIOR TO ITS FILING WITH THE IRS.
FORM 990, PART VI, SECTION B, LINE 12CANNUALLY 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 MEMBER 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 MEMBER IS RECUSED FROM DISCUSSION ON AN ISSUE, THE MINUTES OF COMMITTEE MEETING AND BOARD MEETING WILL DULY RECORD SUCH ACTIONS. THE FOLLOWING POTENTIAL CONFLICTS OF INTEREST WERE DISCLOSED FOR 2021: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $113,659 IN GRANTS AND $9,015 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER DARCY KRUEGER, MD, MPA, IS EMPLOYED AT THE CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER, WHICH RECEIVED A $100,000 GRANT PAYMENT FOR HIS WORK ON STOP-2 AND $8,190 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER JESSICA KREFTING, RN, IS EMPLOYED AT UNIVERSITY OF ALABAMA AT BIRMINGHAM, WHICH RECEIVED $7,715 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER AND CHAIR PETER CRINO, MD, PHD, IS CHAIR OF THE DEPARTMENT OF NEUROLOGY AT THE UNIVERSITY OF MD, WHICH RECIEVED A $18,634 GRANT PAYMENT.
FORM 990, PART VI, SECTION B, LINE 15THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF SCIENTIFIC OFFICER, CFO, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TSC 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 19ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST.

Schedule R IRS990ScheduleR

Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp

Disregarded Entity Name DisregardedEntityName

FieldValueIRS element (for citing)
Business Name Line1TSC ALLIANCE ENDOWMENT FUND INCBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line18737 COLESVILLE ROAD NO 400AddressLine1Txt
CitySILVER SPRINGCityNm
State AbbreviationMDStateAbbreviationCd
ZIP20910ZIPCd
FieldValueIRS element (for citing)
EIN521926919EIN
Primary ActivitiesSUPPORT THE MISSION OF THE TSC ALLIANCEPrimaryActivitiesTxt
Legal Domicile StateMDLegalDomicileStateCd
Exempt Code Section501(C)(3)ExemptCodeSectionTxt
Public Charity StatusLINE 12B, IIPublicCharityStatusTxt
Direct Controlling NAN/ADirectControllingNACd
Controlled Organization0ControlledOrganizationInd
FieldValueIRS element (for citing)
Receipt Of Int Annts Rnts Rylts0ReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth Org0GiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth OrgYes (1)GiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other Org0LoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth Org0LoansOrGuaranteesFromOthOrgInd
Div Related Organization0DivRelatedOrganizationInd
Asset Sale To Other Org0AssetSaleToOtherOrgInd
Asset Purchase From Other Org0AssetPurchaseFromOtherOrgInd
Asset Exchange0AssetExchangeInd
Rental Of Facilities To Oth Org0RentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth Org0RentalOfFcltsFromOthOrgInd
Perform Of Services For Oth Org0PerformOfServicesForOthOrgInd
Perform Of Services By Other Org0PerformOfServicesByOtherOrgInd
Sharing Of FacilitiesYes (1)SharingOfFacilitiesInd
Paid Employees SharingYes (1)PaidEmployeesSharingInd
Reimbursement Paid To Other Org0ReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other Org0ReimbursementPaidByOtherOrgInd
Transfer To Other Org0TransferToOtherOrgInd
Transfer From Other Org0TransferFromOtherOrgInd

Transactions Related Org TransactionsRelatedOrgGrp

Other Organization Name OtherOrganizationName

FieldValueIRS element (for citing)
Business Name Line1TSC ALLIANCE ENDOWMENT FUND INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Transaction TypeCTransactionTypeTxt
Involved$226,000InvolvedAmt
Method Of Amount DeterminationCASHMethodOfAmountDeterminationTxt

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