NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2020
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
- Tax period
- 2020-01-01 to 2020-12-31
- Filed
- 2021-04-12
- IRS object ID
- 202101029349300610
- Schema version
- 2020v4.1
- 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 M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2021-04-12T12:33:19-05:00 | ReturnTs |
| Tax Period End | 2020-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 420714325 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RSM US LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2021 L STREET NW SUITE 400 | AddressLine1Txt |
| City | WASHINGTON | CityNm |
| State Abbreviation | DC | StateAbbreviationCd |
| ZIP | 20036 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2020-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 953018799 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL TUBEROUS SCLEROSIS ASSOCIATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD NO 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KARI L ROSBECK | PersonNm |
| Person Title | PRESIDENT & CEO | PersonTitleTxt |
| Phone | 3015629890 | PhoneNum |
| Signature | 2021-04-12 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | KARI | PersonFirstNm |
| Person Last | ROSBECK | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | XXX-XX-XXXX | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | ELIZABETH W HELLER | PreparerPersonNm |
| PTIN | P00397829 | PTIN |
| Phone | 2022932200 | PhoneNum |
| Preparation | 2021-04-12 | PreparationDt |
Additional Filer Information AdditionalFilerInformation
Trusted Customer TrustedCustomerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | 2 | TrustedCustomerCd |
| Authentication Assurance Level | AAL1 | AuthenticationAssuranceLevelCd |
| Identity Assurance Level | IAL1 | IdentityAssuranceLevelCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2020 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | BuildTS |
Form 990 IRS990
Doing Business As Name DoingBusinessAsName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | KARI L ROSBECK | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD NO 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $5,266,631 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.TSALLIANCE.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1975 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. | ActivityOrMissionDesc |
| Voting Members Governing Body | 27 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 27 | VotingMembersIndependentCnt |
| Total Employee | 22 | TotalEmployeeCnt |
| Total Volunteers | 2284 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $5,527,543 | PYContributionsGrantsAmt |
| CY Contributions Grants | $4,345,011 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $461,658 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $792,685 | CYProgramServiceRevenueAmt |
| PY Investment Income | $27,826 | PYInvestmentIncomeAmt |
| CY Investment Income | $11,770 | CYInvestmentIncomeAmt |
| PY Other Revenue | $699,207 | PYOtherRevenueAmt |
| CY Other Revenue | -$21,302 | CYOtherRevenueAmt |
| PY Total Revenue | $6,716,234 | PYTotalRevenueAmt |
| CY Total Revenue | $5,128,164 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $617,106 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $685,788 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $2,223,956 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $2,382,792 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $941,587 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $2,798,273 | PYOtherExpensesAmt |
| CY Other Expenses | $2,353,610 | CYOtherExpensesAmt |
| PY Total Expenses | $5,639,335 | PYTotalExpensesAmt |
| CY Total Expenses | $5,422,190 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,076,899 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$294,026 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $10,351,316 | TotalAssetsBOYAmt |
| Total Assets EOY | $11,657,873 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $594,729 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $2,195,312 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $9,756,587 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $9,462,561 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE 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 Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $2,543,079 | ExpenseAmt |
| Grant | $680,788 | GrantAmt |
| Revenue | $901,832 | RevenueAmt |
| Desc | RESEARCH PROGRAM STIMULATES AND SUPPORTS BASIC, TRANSLATIONAL, AND CLINICAL RESEARCH ON THE VARIOUS MANIFESTATIONS OF TUBEROUS SCLEROSIS COMPLEX (TSC) TO FURTHER THE DEVELOPMENT OF CLINICAL THERAPIES AND, ULTIMATELY, A CURE FOR TSC. 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 $27.7 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $18.5 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $4.4 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $4.1 MILLION INTO THE PRECLINICAL CONSORTIUM AND $0.7 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 TSALLIANCE.ORG/GRANTS.IMPLEMENTED IN 2006, THE TSC NATURAL HISTORY DATABASE CAPTURES CLINICAL DATA TO DOCUMENT THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER THEIR LIFETIME. 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 2020, 2,268 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.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 TEN 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 (NHD) 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. THE TSC BIOSAMPLE REPOSITORY ENDED 2020 WITH 1,571 BIOSAMPLES: 421 BLOOD SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 358 BUCCAL SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 29 TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 374 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. WE CONTINUE 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. IN 2020, WE ACQUIRED 65 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY, INCLUDING 4 FROM PARTICIPANTS WHO WERE DIAGNOSED WITH COVID-19. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE FUNDED THREE SEED GRANTS IN 2020, TOTALING $60,000, TO LABS WHO SUBMITTED MERITORIOUS AND INNOVATIVE IDEAS FOR RESEARCH ON TSC BIOSAMPLES.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 TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (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 L7-CRE-TSC2 MICE ON BEHALF OF THE PRECLINICAL CONSORTIUM. TWICE A YEAR, THE PRECLINICAL CONSORTIUM HAS A CALL FOR COMPOUND NOMINATIONS 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 2020, 7 COMPANIES WERE ACTIVE MEMBERS OF THE CONSORTIUM. THE CONSORTIUM HAS HAD 14 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 54 STUDIES, EVALUATING 44 CANDIDATE DRUGS. IN 2020, THE TSC PRECLINICAL CONSORTIUM EVALUATED 13 CANDIDATE DRUGS IN MOUSE MODELS AND SCREENED AN ADDITIONAL 10 COMPOUNDS IN CELL-BASED MODELS OF TSC. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $698,125 | ExpenseAmt |
| Grant | $5,000 | GrantAmt |
| Desc | SUPPORT 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 2020 THE TSC ALLIANCE FACILITATED 28,447 PEER-TO-PEER SUPPORTS FROM ADULT REGIONAL COORDINATORS (12 VOLUNTEERS IN 8 REGIONS NATIONWIDE), CLINIC AMBASSADORS (22 VOLUNTEERS IN 26 TSC CLINICS AND TSC CENTERS OF EXCELLENCE NATIONWIDE), DEPENDENT ADULT TRANSITION RESOURCE COORDINATORS (32 VOLUNTEERS IN 26 STATES AND PUERTO RICO), EDUCATION PARENT MENTORS (31 VOLUNTEERS IN 22 STATES), AND COMMUNITY ALLIANCE LEADERS (93 VOLUNTEERS IN 33 REGIONS ACROSS THE UNITED STATES) WITH ACTIVE FUTURE LEADERS (6 VOLUNTEERS) AND PAST FUTURE LEADERS (8 VOLUNTEERS) WHO HAVE AGREED TO REMAIN AS LEADERS FOR OTHER YOUNG ADULTS WITH TSC.EDUCATION PARENT MENTORS ATTENDED 115 SCHOOL MEETINGS (IEPS, EVALUATION TEAM MEETINGS, 504 PLAN MEETINGS, RESOLUTION MEETINGS, AND MEDIATIONS) IN PERSON, THROUGH SKYPE/ FACETIME, 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, DIVIDED INTO 2 REGIONS, WITH A COMMUNITY PROGRAM MANAGER ASSIGNED TO EACH REGION TO MANAGE THE DAY-TO-DAY ACTIVITIES WITHIN THEIR REGIONS. AS OF DECEMBER 31, 2020, THERE WERE 98 LEADERSHIP POSITIONS (50 COMMUNITY ALLIANCE CHAIRS, CO-CHAIRS, VICE CHAIRS AND 48 WALK/FUNDRAISING CHAIRS AND CO-CHAIRS) WITH 3 OPEN POSITIONS. IN 2020, THESE COMMUNITY ALLIANCES PROVIDED LOCAL TSC EDUCATION AND PERSONAL SUPPORT THROUGHOUT THE COUNTRY TO 4,988 FAMILIES/INDIVIDUALS LIVING WITH TSC. TO HELP THE TSC COMMUNITY NAVIGATE THE CHALLENGES OF COVID-19, THE TSC ALLIANCE CREATED A SECTION OF OUR WEBSITE DEDICATED TO SHARING IMPORTANT INFORMATION ABOUT THE PANDEMIC SPECIFICALLY CURATED TO MEET THE NEEDS OF THOSE IMPACTED BY TSC. THE TSC ALLIANCE COVID-19 LANDING PAGE, WWW.TSALLIANCE.ORG/COVID-19, INCLUDES RESOURCES FOR TSC MEDICAL PROFESSIONALS (WITH THE HELP OF OUR PROFESSIONAL ADVISORY BOARD); VACCINE POSITION STATEMENT; LISTING OF TSC CLINICS OFFERING TELEHEALTH; FDA DRUG SHORTAGES; SUPPLY CHAIN UPDATES; CO-PAY SAVINGS PROGRAMS DURING COVID-19; COVID-19 FAQS; COMMUNITY EDUCATIONAL RESOURCES; AND WEBINAR SERIES. THERE WERE 23,447 VIEWS ON THE COVID-19 LANDING PAGE IN 2020.THE TSC ALLIANCE ALSO LAUNCHED A WEEKLY EDUCATIONAL SERIES ON MARCH 23 WITH PROGRAMMING LASTING 11 WEEKS. THIS EFFORT INCLUDED FIVE VIRTUAL TOWN HALLS IN PARTNERSHIP WITH OTHER NONPROFIT ORGANIZATIONS AS WELL AS HOSTING TWO WORLD FORUM WEBINARS FOR TSCI ON MAY 12 AND 26. - MARCH 20: TSC/LAM VIRTUAL TOWN HALL: COVID-19 UPDATE, CO-HOSTED WITH THE LAM FOUNDATION- APRIL 10: VIRTUAL TOWN HALL: ACCESSIBILITY TO CARE, CO-HOSTED WITH THE CHILD NEUROLOGY FOUNDATION AND DUP15Q ALLIANCE- MAY 1: VIRTUAL TOWN HALL: ACCESSIBILITY TO TREATMENTS (INCLUDING DRUG SUPPLY), CO-HOSTED WITH THE DRAVET SYNDROME FOUNDATION AND LGS FOUNDATION- MAY 15: VIRTUAL TOWN HALL: RESCUE MEDS, SEIZURE TRACKER AND A FUTURE GLIMPSE AT FORECASTING SEIZURE RISK, CO-HOSTED WITH SEIZURE TRACKER- MAY 22: TSC/LAM VIRTUAL TOWN HALL: MOVING ON FROM SHELTER IN PLACE, CO-HOSTED WITH THE LAM FOUNDATION THE TSC ALLIANCE ALSO PRESENTED 15 WEBINARS ON TOPICS OF RELEVANCE TO TSC INDIVIDUALS AND FAMILIES, INCLUDING SCHOOLING AT HOME, ANXIETY, SELF-CARE, FILING FOR UNEMPLOYMENT, RESEARCH UPDATES, COMMUNITY PROGRAMS UPDATE, REMOTE BEHAVIORAL INTERVENTIONS AND OTHERS. NINE OPEN FORUMS WERE HELD, PROVIDING A PLATFORM FOR CAREGIVERS, TEENS, SIBLINGS AND ADULTS WITH TSC TO OPENLY DISCUSS ISSUES RELATED TO COVID-19 AND TSC. IN TOTAL, THERE WERE 9,151 VIEWS OF THE WEBINAR AND TOWN HALL SERIES. THE TSC ALLIANCE CO-HOSTED 3 VIRTUAL REGIONAL CONFERENCES WITH THE LAM FOUNDATION FEATURING REGIONAL PROFESSIONALS IN MEMPHIS, GAINSVILLE AND DENVER. THESE EVENTS ATTRACTED A TOTAL OF 818 REGISTERED ATTENDEES, INCLUDING 636 ATTENDEES ON THE DAY OF THE CONFERENCE, 1,106 SUBSEQUENT VIDEO VIEWS, AND 424 VISITS TO THE VIRTUAL EXHIBIT HALLS. THERE WERE 21 SPEAKERS FROM 12 DIFFERENT INSTITUTES, REPRESENTING TSC CLINICS, TSC CENTERS OF EXCELLENCE OR LAM CLINICS. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $502,083 | ExpenseAmt |
| Desc | PUBLIC HEALTH EDUCATION HEIGHTENS AWARENESS OF TSC THROUGHOUT THE GENERAL PUBLIC TO BROADEN THE SCOPE OF SUPPORT AND UNDERSTANDING BEYOND TSC INDIVIDUALS AND THEIR FAMILIES. DURING 2020, THE TSC ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 14,500 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH AN AVERAGE OF MORE THAN 22,300 UNIQUE VISITORS EACH MONTH. THE TSC ALLIANCE ALSO RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS FACEBOOK GROUP BOASTS MORE THAN 10,000 MEMBERS, WHILE ITS TWITTER AND INSTAGRAM ACCOUNTS BOTH HAVE 2,400-PLUS FOLLOWERS. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED 11 EPISODES WITH 1,906 DOWNLOADS. SIX ISSUES OF THE ELECTRONIC, TSC MATTERS, WERE DISTRIBUTED TO 1,006 SUBSCRIBERS. THE TSC ALLIANCE'S ONLINE EDUCATIONAL PLATFORM, TSC ACADEMY, INTRODUCED 3 NEW COURSES COVERING THE TOPICS OF CBD, FDA REVIEW PROCESS AND STATE AND LOCAL ADVOCACY.TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE SIXTH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE AGAIN HEAVILY PROMOTED INFANTILE SPASMS AWARENESS WEEK, DECEMBER 1 TO 7. THIS AWARENESS CAMPAIGN INCLUDED A SOCIAL MEDIA CAMPAIGN AND TARGETED NATIONAL PRINT PUBLICATIONS, MEDICAL TRADE MAGAZINES AND PODCASTS, RESULTING IN 10 MEDIA PLACEMENTS, 31.7 MILLION-PLUS IMPRESSIONS AND 550-PLUS SOCIAL ENGAGEMENTS. IN 2020, THE TSC ALLIANCE'S VARIOUS NEWS RELEASES CULMINATED IN 694 MILLION IMPRESSIONS. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (3 entries)
| ExpenseExpenseAmt | DescDesc |
|---|---|
| $149,611 | GOVERNMENT 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 $500,000 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 2020. MORE THAN 120 MEMBERS OF THE TSC COMMUNITY PARTICIPATED AND ASKED THEIR SENATORS AND REPRESENTATIVES TO SIGN ONTO DEAR COLLEAGUE LETTERS IN SUPPORT OF THE TSCRP. MANY OTHER ADVOCATES WHO WERE NOT ABLE TO TRAVEL TO WASHINGTON, DC MET WITH THEIR SENATORS AND REPRESENTATIVES IN THEIR HOME STATES TO MAKE THE CASE FOR CONTINUED FUNDING. THE FY21 HOUSE DEAR COLLEAGUE LETTER WAS CO-SPONSORED BY REPRESENTATIVES MARKWAYNE MULLIN (R-OK) AND DAVE LOEBSACK (D-IA) AND CLOSED WITH 216 SIGNERS. THE FY21 SENATE DEAR COLLEAGUE LETTER, SPONSORED BY SENATORS KEVIN CRAMER (R-ND) AND JON TESTER (D-MT), CLOSED WITH 35 SIGNATURES. SENATORS CRAMER AND TESTER WERE BOTH NEW SPONSORS FOR FY21. IN FY2021, THE TSC RESEARCH PROGRAM AT THE CDMRP RECEIVED AN $8 MILLION APPROPRIATION, BRINGING THE CUMULATIVE FUNDING TO $97 MILLION SINCE 2002 AS A RESULT OF OUR SUCCESSFUL GRASSROOTS EFFORTS. 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. |
| $66,927 | 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: TS ALLIANCE OF ISRAEL, TS CANADA ST, TS ALLIANCE OF MEXICO, TS ALLIANCE FOUNDATION (IN THAILAND), HUNGARIAN FOUNDATION FOR TUBEROUS SCLEROSIS, AND TS ALLIANCE OF INDIA. THIS TS ALLIANCE RECOGNIZES 10 TSC CLINICS IN GLOBAL ALLIANCE COUNTRIES. |
| $24,324 | 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 TSC ALLIANCE PARTICIPATED IN AND PRESENTED AT 22 PROFESSIONAL MEETINGS IN 2020 INCLUDING: AMERICAN THORACIC SOCIETY (ATS) BOARD MEETING; NATIONAL INSTITUTE FOR NEUROLOGICAL DISORDERS AND STROKE (NINDS) COUNCIL MEETING; EPILEPSY LEARNING HEALTHCARE SYSTEM (ELHS) HIGH-LEVEL VIRTUAL LEARNING SESSION; DRUG INFORMATION ASSOCIATION (DIA) CONFERENCE ON PATIENT ENGAGEMENT; NINDS NONPROFIT FORUM; ATS PUBLIC ADVISORY ROUNDTABLE (ATS PAR) MEET THE EXPERTS, PATIENT/FAMILY EDUCATION FORUM; EPILEPSY LEADERSHIP COUNCIL (ELC) STEERING COMMITTEE MEETING; VIRTUAL WORLD ORPHAN DRUG CONGRESS; VIRTUAL EPILEPSY PIPELINE CONFERENCE; EVERYLIFE FOUNDATION FOR RARE DISEASES NEWBORN SCREENING BOOTCAMP; HEALTH RESEARCH ALLIANCE (HRA) MEMBERS MEETING; ATS LEADERSHIP SUMMIT; GLOBAL GENES RARE PATIENT ADVOCACY UN-SUMMIT; FASTERCURES PARTNERSHIP MATURITY MODEL WORKSHOP; ELHS FALL LEARNING SESSION; GLOBAL GENES: HOW PATIENTS IMPACT THE 505(B)(2) REGULATORY PROCESS; NATIONAL ASSOCIATION OF MANAGED CARE PHYSICIANS; INTERNATIONAL TSC RESEARCH CONFERENCE; EPILEPSY DAY AT DISNEYLAND; GLOBAL GENES RARE ENTREPRENEUR'S BOOTCAMP; AMERICAN EPILEPSY SOCIETY; AND MILKEN INSTITUTE FUTURE OF HEALTH SUMMIT. |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $240,862 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $3,984,149 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | Yes (1) | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 30 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 22 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 27 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 27 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | Yes (1) | MembersOrStockholdersInd |
| Election Of Board Members | Yes (1) | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | THE ORGANIZATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD NO 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (34 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Key EmployeeKeyEmployeeInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|---|
| CHRIS RUSSELL | |||||||||
| CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| PETER CRINO MD PHD | |||||||||
| VICE CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| TIM DILLS | |||||||||
| IMMEDIATE PAST CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| LAURA MARKS | |||||||||
| SECRETARY | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| WILLIAM JOSEPH | |||||||||
| TREASURER | 5.00 | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| JULIE BLUM | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MATT BOLGER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| CASSANDRA CARROLL | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MARK CARROLL | |||||||||
| BOARD MEMBER | 2.00 | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| SARA CHIEFFO | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DAVID COIT | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MARGARET COX | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| BONNIE HOGUE DUFFY | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| STEVEN GOLDSTEIN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| ROB GRANDIA | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DANA HOLINKA | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DARCY A KRUEGER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| HEATHER LENS | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| JIM MAGINN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DIANE MCSWAIN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MUSTAFA SAHIN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| SEAN SHILLINGER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| JUDY SHOULAK | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MATTHEW SIMONIAN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| VANESSA VAZQUEZ | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| PAUL WAXLAX | |||||||||
| BOARD MEMBER | 2.00 | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| TARA ZIMMERMAN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| KARI L ROSBECK | |||||||||
| PRESIDENT & CEO | 54.00 | 1.00 | Yes (X) | $194,307 | $3,598 | $22,457 | |||
| RICHARD GOLLUB | |||||||||
| CFO | 47.00 | 3.00 | Yes (X) | $143,807 | $9,180 | $24,213 | |||
| STEVEN L ROBERDS | |||||||||
| CHIEF SCIENTIFIC OFFICER | 45.00 | 0.00 | $208,882 | $0 | $21,307 | Yes (X) | |||
| JAYE D ISHAM | |||||||||
| VP, COMMUNICATIONS STRATEGY | 45.00 | 0.00 | $119,879 | $0 | $4,398 | Yes (X) | |||
| LISA M MOSS | |||||||||
| SR. DIR. DONOR RELATIONS | 45.00 | 0.00 | $109,573 | $0 | $18,518 | Yes (X) | |||
| APRIL COOPER | |||||||||
| DIR. COMMUNITY PROGRAMS | 45.00 | 0.00 | $107,298 | $0 | $4,722 | Yes (X) | |||
| DEAN RAGER-AGUIAR | |||||||||
| DIR. PRECLINICAL RESEARCH | 45.00 | 0.00 | $147,083 | $0 | $21,593 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,030,829 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $12,778 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $117,208 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 7 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (4 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| PSYCHOGENICS INC | |||||
| 20 GRAMERCY PARK SOUTH | NEW YORK | NY | 10003 | RESEARCH LAB SERVICES | $601,033 |
| VAN ANDEL RESEARCH INSTITUTE | |||||
| 333 BOSTWICK AVE NE | GRAND RAPIDS | MI | 49503 | LABORATORY SERVICES | $144,738 |
| CAVAROCCHI RUSCIO DENNIS AND ASSOCIATES | |||||
| 600 MARYLAND AVE SW | WASHINGTON | DC | 20024 | GOVERNMENT RELATIONS | $113,547 |
| GRAHAM-PELTON CONSULTING | |||||
| 39 BEECHWOOD ROAD | SUMMIT | NJ | 07901 | DEVELOPMENT STRATEGY | $109,122 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 4 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $28,836 | FederatedCampaignsAmt |
| Membership Dues | $4,208 | MembershipDuesAmt |
| Fundraising | $1,192,939 | FundraisingAmt |
| Related Organizations | $330,875 | RelatedOrganizationsAmt |
| Government Grants | $371,820 | GovernmentGrantsAmt |
| All Other Contributions | $2,416,333 | AllOtherContributionsAmt |
| Noncash Contributions | $91,027 | NoncashContributionsAmt |
| Total Contributions | $4,345,011 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt | ExclusionExclusionAmt |
|---|---|---|---|---|
| CONTRACT REVENUE | 900099 | $791,210 | $791,210 | |
| CONFERENCE REVENUE | 900099 | $1,475 | $1,475 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $792,685 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $11,188 | TotalRevenueColumnAmt |
| Exclusion | $11,188 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $87,545 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $86,963 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $582 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $582 | TotalRevenueColumnAmt |
| Exclusion | $582 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $52,486 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,192,939 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $51,504 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $982 | TotalRevenueColumnAmt |
| Exclusion | $982 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | CHANGE INT-ENDOWMENT | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | -$22,284 | TotalRevenueColumnAmt |
| Exclusion | -$22,284 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | -$22,284 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $5,128,164 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $791,210 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$8,057 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $633,006 | TotalAmt |
| Program Services | $633,006 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $52,782 | TotalAmt |
| Program Services | $52,782 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $667,009 | TotalAmt |
| Program Services | $335,572 | ProgramServicesAmt |
| Management And General | $232,186 | ManagementAndGeneralAmt |
| Fundraising | $99,251 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,374,953 | TotalAmt |
| Program Services | $906,889 | ProgramServicesAmt |
| Management And General | $115,728 | ManagementAndGeneralAmt |
| Fundraising | $352,336 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $39,528 | TotalAmt |
| Program Services | $25,520 | ProgramServicesAmt |
| Management And General | $2,182 | ManagementAndGeneralAmt |
| Fundraising | $11,826 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $162,832 | TotalAmt |
| Program Services | $103,675 | ProgramServicesAmt |
| Management And General | $11,963 | ManagementAndGeneralAmt |
| Fundraising | $47,194 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $138,470 | TotalAmt |
| Program Services | $83,373 | ProgramServicesAmt |
| Management And General | $20,023 | ManagementAndGeneralAmt |
| Fundraising | $35,074 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $19,257 | TotalAmt |
| Program Services | $6,482 | ProgramServicesAmt |
| Management And General | $11,733 | ManagementAndGeneralAmt |
| Fundraising | $1,042 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $27,285 | TotalAmt |
| Management And General | $27,285 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $112,980 | TotalAmt |
| Program Services | $112,980 | ProgramServicesAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $376,676 | TotalAmt |
| Program Services | $192,073 | ProgramServicesAmt |
| Management And General | $6,480 | ManagementAndGeneralAmt |
| Fundraising | $178,123 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $207,621 | TotalAmt |
| Program Services | $97,144 | ProgramServicesAmt |
| Management And General | $5,374 | ManagementAndGeneralAmt |
| Fundraising | $105,103 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $169,610 | TotalAmt |
| Program Services | $110,221 | ProgramServicesAmt |
| Management And General | $26,682 | ManagementAndGeneralAmt |
| Fundraising | $32,707 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $119,343 | TotalAmt |
| Program Services | $71,577 | ProgramServicesAmt |
| Management And General | $17,454 | ManagementAndGeneralAmt |
| Fundraising | $30,312 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $109,888 | TotalAmt |
| Program Services | $100,966 | ProgramServicesAmt |
| Management And General | $664 | ManagementAndGeneralAmt |
| Fundraising | $8,258 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $63,378 | TotalAmt |
| Program Services | $53,553 | ProgramServicesAmt |
| Management And General | $9,749 | ManagementAndGeneralAmt |
| Fundraising | $76 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $70,346 | TotalAmt |
| Program Services | $47,126 | ProgramServicesAmt |
| Management And General | $6,541 | ManagementAndGeneralAmt |
| Fundraising | $16,679 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $8,049 | TotalAmt |
| Program Services | $4,833 | ProgramServicesAmt |
| Management And General | $1,184 | ManagementAndGeneralAmt |
| Fundraising | $2,032 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | FundraisingFundraisingAmt | Management And GeneralManagementAndGeneralAmt |
|---|---|---|---|---|
| PRECLINICAL CONSORTIUM | $815,227 | $815,227 | ||
| NHD BIOSAMPLE REPOSIT | $208,188 | $208,188 | ||
| DUES AND SUBSCRIPTIONS | $40,684 | $20,749 | $19,935 | |
| MISCELLANEOUS EXPENSES | $5,078 | $2,213 | $1,639 | $1,226 |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,422,190 | TotalAmt |
| Program Services | $3,984,149 | ProgramServicesAmt |
| Management And General | $496,454 | ManagementAndGeneralAmt |
| Fundraising | $941,587 | FundraisingAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Joint Costs | Yes (X) | JointCostsInd |
Total Joint Costs TotalJointCostsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $66,240 | TotalAmt |
| Program Services | $33,120 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $33,120 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $809,370 | BOYAmt |
| EOY | $1,097,500 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,227,121 | BOYAmt |
| EOY | $1,238,876 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,033,626 | BOYAmt |
| EOY | $1,578,285 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,243 | BOYAmt |
| EOY | $113,491 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $251,370 | BOYAmt |
| EOY | $392,003 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $735,604 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $225,237 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $80,221 | BOYAmt |
| EOY | $510,367 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $27,556 | BOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,911,809 | BOYAmt |
| EOY | $6,727,351 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,351,316 | BOYAmt |
| EOY | $11,657,873 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $532,853 | BOYAmt |
| EOY | $435,478 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $54,700 | BOYAmt |
| EOY | $422,226 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,176 | BOYAmt |
| EOY | $1,337,608 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $594,729 | BOYAmt |
| EOY | $2,195,312 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,661,364 | BOYAmt |
| EOY | $5,954,477 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,095,223 | BOYAmt |
| EOY | $3,508,084 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,756,587 | BOYAmt |
| EOY | $9,462,561 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,351,316 | BOYAmt |
| EOY | $11,657,873 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$294,026 | ReconcilationRevenueExpnssAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $4,517,826 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,949,953 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,105,376 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,527,543 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $4,345,011 | CurrentTaxYearAmt |
| Total | $22,445,709 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $4,517,826 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,949,953 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,105,376 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,527,543 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $4,345,011 | CurrentTaxYearAmt |
| Total | $22,445,709 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $3,416,325 | SubstantialContributorsTotAmt |
| Public Support Total170 | $19,029,384 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $15,431 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $10,393 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $13,784 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $27,444 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,188 | CurrentTaxYearAmt |
| Total | $78,240 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $44,490 | CurrentTaxYearMinus4YearsAmt |
| Total | $44,490 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $1,683 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $642 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,243 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $714 | CurrentTaxYearMinus1YearAmt |
| Total | $4,282 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $22,572,721 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $7,774,339 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.84300 | PublicSupportCY170Pct |
| Public Support PY170 | 0.82340 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Form990 Schedule A Part VI Form990ScheduleAPartVIGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: | FormAndLineReferenceDesc |
| Explanation | INCOME FROM ACTIVITIES NOT REGULARLY CARRIED ON - 2016 AMOUNT: $ 1,683. 2017 AMOUNT: $ 642. 2018 AMOUNT: $ 1,243. 2019 AMOUNT: $ 714. 2020 AMOUNT: $ 0. | ExplanationTxt |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $895 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $122,119 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $123,014 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,350,680 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,473,694 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $423,685 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $105,921 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $416,065 | CurrentYearMinus3Amt |
| Current Year Minus2 | $450,555 | CurrentYearMinus2Amt |
| Current Year Minus1 | $445,393 | CurrentYearMinus1Amt |
| Current Year | $423,685 | CurrentYearAmt |
| Total | $1,735,698 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $2,603,547 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $146,199 | CurrentYearMinus3Amt |
| Current Year Minus2 | $149,340 | CurrentYearMinus2Amt |
| Current Year Minus1 | $165,226 | CurrentYearMinus1Amt |
| Current Year | $123,014 | CurrentYearAmt |
| Total | $583,779 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $104,016 | CurrentYearMinus3Amt |
| Current Year Minus2 | $112,639 | CurrentYearMinus2Amt |
| Current Year Minus1 | $111,348 | CurrentYearMinus1Amt |
| Current Year | $105,921 | CurrentYearAmt |
| Total | $433,924 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $650,886 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $1,797 | CurrentYearMinus3Amt |
| Current Year Minus2 | $823 | CurrentYearMinus2Amt |
| Current Year Minus1 | $2,491 | CurrentYearMinus1Amt |
| Current Year | $895 | CurrentYearAmt |
| Total | $6,006 | TotalAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,915,805 | BeginningYearBalanceAmt |
| Contributions | $54,645 | ContributionsAmt |
| Investment Earnings Or Losses | $416,431 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $463,721 | OtherExpendituresAmt |
| Administrative Expenses | $29,639 | AdministrativeExpensesAmt |
| End Year Balance | $5,893,521 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,193,934 | BeginningYearBalanceAmt |
| Contributions | $78,962 | ContributionsAmt |
| Investment Earnings Or Losses | $959,121 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $288,356 | OtherExpendituresAmt |
| Administrative Expenses | $27,856 | AdministrativeExpensesAmt |
| End Year Balance | $5,915,805 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,655,555 | BeginningYearBalanceAmt |
| Contributions | $82,346 | ContributionsAmt |
| Investment Earnings Or Losses | -$439,321 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $50,000 | OtherExpendituresAmt |
| Administrative Expenses | $54,646 | AdministrativeExpensesAmt |
| End Year Balance | $5,193,934 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,293,989 | BeginningYearBalanceAmt |
| Contributions | $92,635 | ContributionsAmt |
| Investment Earnings Or Losses | $739,072 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $403,000 | OtherExpendituresAmt |
| Administrative Expenses | $67,141 | AdministrativeExpensesAmt |
| End Year Balance | $5,655,555 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $4,763,517 | BeginningYearBalanceAmt |
| Contributions | $58,749 | ContributionsAmt |
| Investment Earnings Or Losses | $525,868 | InvestmentEarningsOrLossesAmt |
| Administrative Expenses | $54,145 | AdministrativeExpensesAmt |
| End Year Balance | $5,293,989 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 0.85080 | BoardDesignatedBalanceEOYPct |
| Prmnnt Endowment Balance EOY | 0.14920 | PrmnntEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | Yes (1) | EndowmentsHeldRelatedOrgInd |
| Related Org List Sch R | Yes (1) | RelatedOrgListSchRInd |
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $449,272 | OtherCostOrOtherBasisAmt |
| Depreciation | $30,632 | DepreciationAmt |
| Book Value | $418,640 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $191,620 | OtherCostOrOtherBasisAmt |
| Depreciation | $109,910 | DepreciationAmt |
| Book Value | $81,710 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $94,712 | OtherCostOrOtherBasisAmt |
| Depreciation | $84,695 | DepreciationAmt |
| Book Value | $10,017 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $510,367 | TotalBookValueLandBuildingsAmt |
Other Assets Org OtherAssetsOrgGrp (2 entries)
| DescDesc | Book ValueBookValueAmt |
|---|---|
| INTEREST IN NET ASSETS OF AFFILIATE | $5,893,521 |
| OPERATING LEASE RIGHT-OF-USE ASSET | $833,830 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | $6,727,351 | TotalBookValueOtherAssetsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)
| DescDesc | AmtAmt |
|---|---|
| DEFERRED RENT & LEASE INCENTIVE | $1,336,433 |
| DUE TO AFFILIATE | $1,175 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $1,337,608 | TotalLiabilityAmt |
| Total Rev Etc Audited Fincl Stmt | $5,210,068 | TotalRevEtcAuditedFinclStmtAmt |
| Donated Services And Use Fclts | $81,904 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $81,904 | RevenueNotReportedAmt |
| Revenue Subtotal | $5,128,164 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $5,128,164 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $5,504,094 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $81,904 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $81,904 | ExpensesNotReportedAmt |
| Expenses Subtotal | $5,422,190 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $5,422,190 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART V, LINE 4: | FormAndLineReferenceDesc |
| Explanation | 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. | ExplanationTxt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt | Specific Services ProvidedSpecificServicesProvidedTxt |
|---|---|---|---|---|---|
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | GRANTMAKING | $34,032 | |
| MIDDLE EAST AND NORTH AFRICA | 0 | 0 | GRANTMAKING | $18,750 | |
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | PROGRAM SERVICE ACTIVITIES | $58,944 | PRECLINICAL RESEARCH STUDIES |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $111,726 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $111,726 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| MIDDLE EAST AND NORTH AFRICA | RESEARCH ON TUBEROUS SCLEROSIS COMPLEX | $18,750 | WIRE |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | PROGRAMMATIC SUPPORT | $34,032 | WIRE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 0 | Total501c3OrgCnt |
| Total Other Org | 2 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | VIRTUAL WALKS | Event1Nm |
| Gross Receipts Event1 | $660,000 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $626,454 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $33,546 | GrossRevenueEvent1Amt |
| Non Cash Prizes Event1 | $33,308 | NonCashPrizesEvent1Amt |
| Food And Beverage Event1 | $58 | FoodAndBeverageEvent1Amt |
| Entertainment Event1 | $180 | EntertainmentEvent1Amt |
| Event2 | COMEDY FOR A CURE | Event2Nm |
| Gross Receipts Event2 | $179,147 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $175,292 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $3,855 | GrossRevenueEvent2Amt |
| Non Cash Prizes Event2 | $756 | NonCashPrizesEvent2Amt |
| Food And Beverage Event2 | $137 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $1,979 | EntertainmentEvent2Amt |
| Other Events Total | 9 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $406,278 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $391,193 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $15,085 | GrossRevenueOtherEventsAmt |
| Non Cash Prizes Other Events | $4,129 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $8,091 | RentFcltyCostsOtherEventsAmt |
| Food And Beverage Other Events | $2,739 | FoodAndBeverageOtherEventsAmt |
| Entertainment Other Events | $127 | EntertainmentOtherEventsAmt |
| Gross Receipts Total | $1,245,425 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,192,939 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $52,486 | GrossRevenueTotalEventsAmt |
| Non Cash Prizes Total Events | $38,193 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $8,091 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $2,934 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $2,286 | EntertainmentTotalEventsAmt |
| Direct Expense Summary Events | $51,504 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $982 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (13 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|
| BRIGHAM & WOMAN'S HOSPITAL | ||||||||
| 75 SAINT FRANCIS STREET | BOSTON | MA | 02115 | 042312909 | 501(C)(3) | $55,436 | RESEARCH GRANTS | |
| UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER | ||||||||
| 5323 HARRY HINES BLVD | DALLAS | TX | 75287 | 756002868 | 501(C)(3) | $56,250 | RESEARCH GRANTS | |
| YALE UNIVERSITY | ||||||||
| POBOX 1873 | NEW HAVEN | CT | 06508 | 060646973 | 501(C)(3) | $56,011 | RESEARCH GRANTS | |
| AMERICAN THORACIC SOCIETY | ||||||||
| 25 BROADWAY 18TH FLOOR | NEW YORK | NY | 10004 | 061548706 | 501(C)(3) | $5,500 | RESEARCH GRANTS | |
| CHILDREN'S HOSPITAL MEDICAL CENTER | ||||||||
| SPONSORED PRGS ACTG ML 4900 3333 | CINCINNATI | OH | 45229 | 310833936 | 501(C)(3) | $50,000 | CLINICAL RESEARCH GRANTS | BURNET AVE |
| NATIONAL ORGANIZATION FOR RARE DISORDERS | ||||||||
| 55 KENOSIA AVENUE | DANBURY | CT | 06810 | 133223946 | 501(C)(3) | $65,000 | TSC TRAVEL AND LODGING ASSISTANCE PROGRAM | |
| NORTHWESTERN UNIVERSITY | ||||||||
| 7TH FLOOR RUBLOFF BUILDING | CHICAGO | IL | 60611 | 362167818 | 501(C)(3) | $75,001 | RESEARCH GRANTS | |
| CHILDREN'S HOSPITAL CORPORATION | ||||||||
| 300 LONGWOOD AVENUE | BOSTON | MA | 02115 | 042774441 | 501(C)(3) | $150,001 | RESEARCH GRANTS | |
| BOSTON CHILDREN'S HOSPITAL | ||||||||
| 300 LONGWOOD AVENUE | BOSTON | MA | 02115 | 042774441 | 501(C)(3) | $57,409 | CLINICAL RESEARCH GRANT | |
| UNIVERSITY OF CALIFORNIA BERKELEY | ||||||||
| 1608 FOURTH ST STE 220 | BERKELEY | CA | 94710 | 946002123 | 501(C)(3) | $9,375 | RESEARCH GRANT | |
| UNIVERSITY OF ALABAMA | ||||||||
| 1720 2ND AVE SOUTH AB990 | BIRMINGHAM | AL | 35294 | 636005396 | 501(C)(3) | $15,533 | CLINICAL RESEARCH GRANT | |
| UNIVERSITY OF TENNESSEE HEALTH SCIENCE CTR | ||||||||
| 910 MADISON AVE STE 823 | MEMPHIS | TN | 38103 | 626001636 | 501(C)(3) | $18,511 | RESEARCH GRANT | |
| VANDERBILT UNIVERSITY | ||||||||
| 1161 21ST AVE SOUTH | NASHVILLE | TN | 37232 | 352528741 | 501(C)(3) | $9,375 | RESEARCH GRANT | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 13 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE TSC ALLIANCE HAS FUNDED MORE THAN $27.7 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | Yes (1) | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | Yes (1) | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| KARI L ROSBECK | ||||||||||||||
| PRESIDENT & CEO | $176,975 | $3,277 | $17,191 | $318 | $141 | $3 | $6,045 | $112 | $17,047 | $316 | $217,399 | $4,026 | $0 | $0 |
| RICHARD GOLLUB | ||||||||||||||
| CFO | $131,082 | $8,367 | $12,338 | $788 | $387 | $25 | $4,504 | $288 | $19,255 | $1,229 | $167,566 | $10,697 | $0 | $0 |
| STEVEN L ROBERDS | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $190,616 | $0 | $17,998 | $0 | $268 | $0 | $6,407 | $0 | $15,963 | $0 | $231,252 | $0 | $0 | $0 |
| DEAN RAGER-AGUIAR | ||||||||||||||
| DIR. PRECLINICAL RESEARCH | $140,752 | $0 | $6,188 | $0 | $143 | $0 | $4,674 | $0 | $17,982 | $0 | $169,739 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 5 | KARI 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 6 | KARI 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
Clothing And Household Goods ClothingAndHouseholdGoodsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Noncash Contributions Rpt F990 | $422 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 6 | ContributionCnt |
| Noncash Contributions Rpt F990 | $87,545 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
Food Inventory FoodInventoryGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 2 | ContributionCnt |
| Noncash Contributions Rpt F990 | $3,060 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form8283 Received | 0 | Form8283ReceivedCnt |
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (7 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 4A (CONT'D): | 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 $35 MILLION BY THE NATIONAL INSTITUTES OF HEALTH (NIH) 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 DECEMBER 2021 AND FINAL RESULTS IN LATE 2022 OR 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 UTILIZING A SIMILAR PROTOCOL BUT TESTING THE EFFECTS OF SIROLIMUS INSTEAD OF VIGABATRIN. THE STOPPING TSC ONSET AND PROGRESSION 2 (STOP-2) TRIAL OPENED AT CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER, AND THE TSC ALLIANCE IS CONTRIBUTING $200,000 TO ENABLE THE TRIAL TO BE EXPANDED TO ADDITIONAL SITES ACROSS THE COUNTRY IN 2021. 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 LAST YEAR FOR A SECOND 5-YEAR FUNDING PERIOD. TSC ALLIANCE FUNDS A PORTION OF CLINICAL RESEARCH COORDINATORS' SALARIES AT 5 SITES AND WILL BEGIN FUNDING A 2-YEAR CLINICAL FELLOWSHIP IN TSC BEGINNING 2021. 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. THE FIRST INNOVATION WORKSHOP WAS HELD IN 2020 AND FOCUSED ON NEWBORN SCREENING. THIS WORKSHOP'S GOALS INCLUDED: DEFINE THE CRITICAL PATH - OR RATE-LIMITING STEPS - OF DEVELOPING A SCREENING ASSAY TO ENABLE NOMINATION OF TSC TO THE RECOMMENDED UNIFORM SCREENING PANEL; SPECIFY THE IMMEDIATE NEXT STEPS NEEDED ALONG THE CRITICAL PATH; RECOMMEND COMPONENTS OF A FUNDING OPPORTUNITY ANNOUNCEMENT TO ELICIT THE BEST IDEAS AND APPLICANTS TO IMPLEMENT THOSE NEXT STEPS; AND ENABLE TSC ALLIANCE TO FUND THE MOST MERITORIOUS APPLICATIONS WITHIN 100 DAYS AFTER THE WORKSHOP. ORIGINALLY, THE TSC ALLIANCE HAD PLANNED TO HOST AN IN-PERSON WORKSHOP TO BE HELD IN EARLY JUNE. HOWEVER, DUE TO THE NOVEL CORONAVIRUS PANDEMIC, THE INNOVATION WORKSHOP WAS RE-IMAGINED AS A SERIES OF VIRTUAL MEETINGS PUNCTUATED BY ONLINE DISCUSSION USING THE PLATFORM POWERNOODLE. THE FINAL CUMULATIVE DISCUSSION WILL TAKE PLACE IN EARLY JANUARY 2021 AND WILL BE FOLLOWED BY AN FOA IN THE FIRST QUARTER OF 2021. |
| 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 TSC ALLIANCE IS A MEMBERSHIP-BASED ORGANIZATION, WHICH MEANS MEMBERS HELP ELECT THE BOARD OF DIRECTORS. THE TSC ALLIANCE MEMBERSHIP PROGRAM ALLOWED INDIVIDUALS TO STATE THEIR INTENT TO BE A MEMBER FOR THE PURPOSE OF GOVERNANCE. THERE WERE NO LEVELS TO MEMBERSHIP IN 2020. ANYONE CAN BE A MEMBER AT NO COST. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE 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 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 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 2020: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $132,409 IN GRANTS AND $13,935 IN FEES FOR SERVCIES 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 $50,000 GRANT PAYMENT FOR HIS WORK ON STOP-2 AND $26,335 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. |
| FORM 990, PART VI, SECTION B, LINE 15 | THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF SCIENTIFIC OFFICER, CONTROLLER & 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 19 | ALL 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE ENDOWMENT FUND INC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD SUITE 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 521926919 | EIN |
| Primary Activities | SUPPORT ORG | PrimaryActivitiesTxt |
| Legal Domicile State | MD | LegalDomicileStateCd |
| Exempt Code Section | 501(C)(3) | ExemptCodeSectionTxt |
| Public Charity Status | LINE 12B, II | PublicCharityStatusTxt |
| Direct Controlling NA | N/A | DirectControllingNACd |
| Controlled Organization | 0 | ControlledOrganizationInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | 0 | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | Yes (1) | GiftGrntCapContriFromOthOrgInd |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrgInd |
| Loans Or Guarantees From Oth Org | 0 | LoansOrGuaranteesFromOthOrgInd |
| Div Related Organization | 0 | DivRelatedOrganizationInd |
| Asset Sale To Other Org | 0 | AssetSaleToOtherOrgInd |
| Asset Purchase From Other Org | 0 | AssetPurchaseFromOtherOrgInd |
| Asset Exchange | 0 | AssetExchangeInd |
| Rental Of Facilities To Oth Org | 0 | RentalOfFacilitiesToOthOrgInd |
| Rental Of Fclts From Oth Org | 0 | RentalOfFcltsFromOthOrgInd |
| Perform Of Services For Oth Org | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | Yes (1) | SharingOfFacilitiesInd |
| Paid Employees Sharing | Yes (1) | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |
Transactions Related Org TransactionsRelatedOrgGrp
Other Organization Name OtherOrganizationName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE ENDOWMENT FUND INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transaction Type | C | TransactionTypeTxt |
| Involved | $330,875 | InvolvedAmt |
| Method Of Amount Determination | CASH | MethodOfAmountDeterminationTxt |
Comments