2024-09-24T12:50:14-05:00 2022-12-31 470900880 CALIBRE CPA GROUP PLLC 7501 WISCONSIN AVENUE SUITE 1200 WEST BETHESDA MD 20814 990 2022-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION NATI 3015629890 8737 COLLESVILLE ROAD 400 SILVER SPRING MD 20910 KARI L ROSBECK PRESIDENT & CEO 3015629890 2024-09-17 1 0 KRISTIN A JACQUELIN CPA P01325865 2023319880 2024-09-24 2022 2024-08-08 14:25:15Z X TSC ALLIANCE KARI L ROSBECK 8737 COLLESVILLE ROAD 400 SILVER SPRING MD 20910 9035766 0 X WWW.TSCALLIANCE.ORG X 1975 CA FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 30 30 27 2534 0 0 5769053 7016851 2234262 2720317 5670 2636 1007002 -830262 9015987 8909542 948236 1032155 0 0 2455940 2896346 0 0 1133515 3465386 4135183 6869562 8063684 2146425 845858 14046866 14827937 2437880 2373091 11608986 12454846 X 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. 0 0 3793333 1032155 2010425 RESEARCH PROGRAMS. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION. 1701258 SUPPORT SERVICES. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION. 520059 PUBLIC HEALTH. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION. 162724 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 $1.1 MILLION IN STATE APPROPRIATIONS. ADDITIONALLY, ALABAMA HELD THEIR FIRST ADVOCACY PROCLAMATION DAY WITH THEIR GOVERNOR 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 2022. MORE THAN 204 PEOPLE FROM 42 STATES REGISTERED TO PARTICIPATE IN THE VIRTUAL MARCH ON CAPITOL HILL. ADVOCATES MADE VIRTUAL APPOINTMENTS TO ADVOCATE FOR $10 MILLION IN FUNDING FOR THE TSCRP. THE HOUSE TSCRP DEAR COLLEAGUE LETTER SPONSORED BY REPRESENTATIVES MULLIN (R-OK) AND RASKIN (D-MD) CLOSED WITH 205 SIGNERS. THE SENATE LETTER SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) CLOSED WITH 35 SIGNERS. TOTAL FUNDING FOR THE TSCRP HAS BEEN $113 MILLION SINCE 2002, INCLUDING AN $8 MILLION APPROPRIATION APPROVED IN DECEMBER 2022 FOR FY23. 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; TWO TSCRP AWARDS IN FY2012 AND FY2015 THAT ENABLED GENERATION OF A POTENTIAL APPROACH FOR GENE THERAPY OF TSC, WHICH HAS SHOWN PROMISING RESULTS IN A MOUSE MODEL OF TSC TUMORS IN THE BRAIN; 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 THAT LED THE THE THIRD FDA-APPROVED DRUG TO TREAT TSC IN APRIL 2022; AND A CLINICAL RESEARCH NETWORK THAT 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 13 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 DECEMBER, THERAPEUTIC ADVANCES IN RARE DISEASE PUBLISHED "RACIAL DIFFERENCES IN THE DERMATOLOGICAL MANIFESTATIONS OF TUBEROUS SCLEROSIS COMPLEX AND THE POTENTIAL EFFECTS ON DIAGNOSIS AND CARE," TO RAISE AWARENESS OF DERMATOLOGICAL MANIFESTATIONS ASSOCIATED WITH TSC, COMPARE THEIR APPEARANCE BY RACE, AND CONSIDER HOW RECOGNITION OF THESE FEATURES COULD IMPACT DIAGNOSIS AND TREATMENT OF TSC.THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 28 PROFESSIONAL MEETINGS IN 2022 INCLUDING TANDEM CONSORTIUM MEETING, NOBELPHARMA TOWN HALL, MALLINCKRODT AD BOARD, NAPNAP, ACMG, TAND MINI-SYMPOSIUM (TANDEM), MUSCULAR DYSTROPHY COORDINATING COMMITTEE SPRING 2022 MEETING, AMERICAN THORACIC SOCIETY 2022 INTERNATIONAL CONFERENCE, RARE DISEASES INTERNATIONAL: 75TH WORLD HEALTH ASSEMBLY SIDE EVENT: NETWORKING, INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE) ANNUAL MEETING, NINDS NONPROFIT FORUM, WORLD TSC CONFERENCE, LAMPOSIUM, GLOBAL GENES RARE SUMMIT, HRA FALL 2022 MEMBERS MEETING, RDCRN FALL MEETING, MN PHARM CONF, ACHG, GLOBAL GENES ATLANTA, ISAN MEMBERSHIP MEETING, EVERYLIFE NBS BOOTCAMP, TSCRP, AMERICAN EPILEPSY SOCIETY, ATS PAR PLANNING MEETING, ARPA-H RARE DISEASE PLANNING MEETING, TANDEM SOUTH AFRICA, ATS PAR LUNG WEEK, AND PAME. 105440 -1195869 OTHER PROGRAM SERVICES 268164 -1195869 6282814 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 0 0 1 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 29 0 1 27 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 30 30 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AR CA FL GA HI IL IN KS KY MD MA MI MN MS NH NJ NM NY NC OR PA RI SC TN UT VA WI WV X X X TSC ALLIANCE 3015629890 8737 COLLESVILLE ROAD 400 SILVER SPRING MD 20910 PETER CRINO MD PHD CHAIR 5.00 X X 0 0 0 WILLIAM JOSEPH VICE CHAIR 5.00 1.00 X X 0 0 0 PAUL WAXLAX TREASURER 5.00 1.00 X X 0 0 0 JESSICA KREFTING SECRETARY 5.00 X X 0 0 0 DEREK BAUER BOARD MEMBER 2.00 X 0 0 0 JULIE BLUM BOARD MEMBER 2.00 X 0 0 0 MATT BOLGER BOARD MEMBER 2.00 X 0 0 0 EDWARD BURKHALTER BOARD MEMBER 2.00 X 0 0 0 LISA CARLTON BOARD MEMBER 2.00 X 0 0 0 MARK CARROLL BOARD MEMBER 2.00 X 0 0 0 SARA CHIEFFO BOARD MEMBER 2.00 X 0 0 0 DAVID COIT BOARD MEMBER 2.00 X 0 0 0 MARGARET COX BOARD MEMBER 2.00 X 0 0 0 JULIAN GANGOLLI BOARD MEMBER 2.00 X 0 0 0 TANJALA GIPSON BOARD MEMBER 2.00 X 0 0 0 STEVEN GOLDSTEIN BOARD MEMBER 2.00 X 0 0 0 ROB GRANDIA BOARD MEMBER 2.00 X 0 0 0 DANA HOLINKA BOARD MEMBER 2.00 X 0 0 0 LESLEY HOLMES BOARD MEMBER 2.00 X 0 0 0 DARCY KRUEGER BOARD MEMBER 2.00 X 0 0 0 PATROSKI LAWSON BOARD MEMBER 2.00 X 0 0 0 KRISTI LENGYEL BOARD MEMBER 2.00 X 0 0 0 HEATHER LENS BOARD MEMBER 2.00 X 0 0 0 LAURA MARKS BOARD MEMBER 2.00 X 0 0 0 DIANE MCSWAIN BOARD MEMBER 2.00 X 0 0 0 MUSTAFA SAHIN BOARD MEMBER 2.00 X 0 0 0 SEAN SHILLINGER BOARD MEMBER 2.00 X 0 0 0 BRITTANY SMITH BOARD MEMBER 2.00 X 0 0 0 VANESSA VAZQUEZ BOARD MEMBER 2.00 X 0 0 0 TARA ZIMMERMAN BOARD MEMBER 2.00 X 0 0 0 KARI LUTHER ROSBECK PRESIDENT & CEO 54.00 1.00 X 217716 2756 28910 CYNTHIA ARCURI CHIEF FINANCIAL OFFICER 42.00 3.00 X 146692 11324 9841 RICHARD GOLLUB CHIEF FINANCIAL OFFICER 42.00 3.00 X 80583 4241 8795 STEVEN ROBERDS CHIEF SCIENTIFIC OFFICER 45.00 X 233206 0 26309 DEAN RAGER-AGUIAR VICE PRESIDENT, TRANSLATIONAL RESEARCH 45.00 X 164261 0 27214 LISA MOSS VICE PRESIDENT, DONOR RELATIONS 45.00 X 122204 0 23858 JAYE ISHAM SENIOR VICE PRESIDENT, STRATEGIC COMMUNICATIONS 45.00 X 133868 0 4136 APRIL COOPER VICE PRESIDENT, COMMUNITY PROGRAMS 45.00 X 114370 0 25298 ASHLEY POUNDERS DIRECTOR OF MEDICAL AFFAIRS 45.00 X 111519 0 13976 1324419 18321 168337 8 0 1 0 PSYCHOGENICS INC 20 GRAMERCY PARK S NEW YORK NY 10003 RESEARCH LAB SERVICES 1194468 MMS HOLDINGS INC 6880 COMMERCE BLVD CANTON MI 48187 RESEARCH LAB SERVICES 121387 CAVAROCCHI RUSCIO DENNIS & ASSOCIATES 600 MARYLAND AVE SW SUITE 220 EAST WASHINGTON DC 20024 GOVERNMENT RELATIONS 116364 GEBEN COMMUNICATIONS 143 E MAIN STREET SUITE 200 COLUMBUS OH 43215 MARKING CONSULTING 102875 4 51247 4057 1068063 308000 5585484 7016851 CONTRACT REVENUE 900099 1906672 1906672 CONFERENCE REVENUE 900099 813645 103753 709892 2720317 2382 2382 1000 746 254 254 254 491085 1068063 125478 365607 365607 CHANGE IN INTEREST OF AFFILIATE 900099 -1211361 -1211361 15492 15492 -1195869 8909542 814556 0 1078135 857545 857545 174610 174610 726880 439838 125197 161845 1744717 1055732 300508 388477 47394 27339 8117 11938 202902 117658 34771 50473 174453 102086 29928 42439 29466 17750 3330 8386 26964 16243 3047 7674 116364 70096 13151 33117 245601 147945 27758 69898 8650 5841 19 2790 336605 179434 20067 137104 201876 107508 26747 67621 132836 78280 23002 31554 196970 149622 3105 44243 982138 937141 6214 38783 2499 3 221 2275 68866 44740 8315 15811 11620 6854 2025 2741 PRECLINICAL CONSORTIUM 1407092 1407092 NHD BIOSAMPLE REPOSIT 321369 321369 DUES AND SUBSCRIPTIONS 40210 16979 11104 12127 6057 1109 729 4219 8063684 6282814 647355 1133515 X 36068 18034 0 18034 1459324 1711209 1242438 694859 2698495 5280316 99173 181490 620148 277696 811270 347998 437169 463272 7490119 6219095 14046866 14827937 472049 891501 676798 285264 1289033 1196326 2437880 2373091 X 6580605 5151339 5028381 7303507 11608986 12454846 14046866 14827937 X 845858 2 X X 0 1 X 1 0 X 4105376 5527543 4345011 5769053 7016851 26763834 4105376 5527543 4345011 5769053 7016851 26763834 4752141 22011693 13784 27444 11188 3809 2382 58607 1243 714 15492 17449 26839890 9192344 0.82010 0.84730 X SCHEDULE A, PART II, LINE 10, EXPLANATION FOR OTHER INCOME: INCOME FROM ACTIVITIES NOT REGULARLY CARRIED ON 2017 AMOUNT: $ 642. 2018 AMOUNT: $ 1,243. 2019 AMOUNT: $ 714 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1395 161376 162771 7856589 8019360 550968 137742 0 0 445393 423685 497465 550968 1917511 2876267 165226 123014 154139 162771 605150 111348 105921 124366 137742 479377 719066 2491 895 1127 1395 5908 6711748 68423 -860036 238000 181748 5500387 5893521 132476 1053588 333813 34024 6711748 5915805 54645 416431 463721 29639 5893521 5193934 78962 959121 288356 27856 5915805 5655555 82346 -439321 50000 54646 5193934 0.84257 0.15127 0.00616 0 1 1 449272 112318 336954 281726 155408 126318 80272 80272 0 463272 NET ASSETS OF AFFILIATE 5500387 OPERATING LEASE RIGHT-OF-USE ASSET 718708 6219095 OPERATING LEASE LIABILITY 1189842 DUE FROM RELATED PARTY 6484 1196326 8919542 10000 10000 8909542 0 8909542 8199161 10000 -1 9999 8189162 -125478 -125478 8063684 PART V, LINE 4: THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S ENDOWMENTS INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENOWMENT FUND AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE. PART XII, LINE 2D - OTHER ADJUSTMENTS: ROUNDING -1. PART XII, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES INCLUDED ON PART VIII -125,478. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 118360 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 56250 0 0 0 0 0 0 174610 0 174610 EUROPE (INCLUDING ICELAND & GREENLAND) BIOSAMPLE SEED GRANT AWARD 14696 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH ON TUBEROUS SCLEROSIS COMPLEX 17150 WIRE TRANSFER 0 MIDDLE EAST AND NORTH AFRICA RESEARCH 56250 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) YOUNG INVESTIGATOR FELLOWSHIP AWARD 78014 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) BIOSAMPLE SEED GRANT AWARD 8500 WIRE TRANSFER 0 0 4 0 0 0 0 0 0 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: WALK-RUN-RIDE EVENTS 765725 558425 207300 31824 991 3490 2635 COMEDY FOR A CURE 588050 509638 78412 1654 10463 62124 4356 8 205373 0 205373 3031 1428 3156 325 1559148 1068063 491085 36509 12882 68770 7316 125477 365608 1 UNIVERSITY OF CALIFORNIA LOS ANGELES CAMPUS 10889 WILSHIRE BLVD SUITE 700 LOS ANGELES CA 90095 956006143 501(C)(3) 13200 0 RESEARCH GRANT CLEMSON UNIVERSITY 391 COLLEGE AVENUE SUITE 301 CLEMSON SC 29634 576000254 501(C)(3) 17624 0 RESEARCH GRANT BRIGHAM & WOMEN'S HOSPITAL POB 3149 BOSTON MA 02241 042312909 501(C)(3) 179892 0 RESEARCH GRANT NATIONAL ORGANIZATION FOR RARE DISORDERS DEPT 5430 PO BOX 4110 WOBURN MA 01888 133223946 501(C)(3) 75000 0 TSC TRAVEL AND LODGING ASSISTANCE PROGRAM NATIONWIDE CHILDREN'S HOSPITAL DEPT 781653 PO BOX 78000 DETROIT MI 48278 316056230 501(C)(3) 20000 0 RESEARCH GRANT UNIVERSITY OF VIRGINIA 1001 N EMMET ST CHARLOTTESVILLE VA 22903 546001796 501(C)(3) 18750 0 RESEARCH GRANT COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK 615 W 131ST STREET 6TH FLOOR MAIL CODE 8725 NEW YORK NY 10027 135598093 501(C)(3) 18750 0 RESEARCH GRANT UNIVERSITY OF MARYLAND BALTIMORE PO BOX 41428 BALTIMORE MD 21203 526002033 501(C)(3) 75000 0 RESEARCH GRANT UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 756002868 501(C)(3) 75000 0 RESEARCH GRANT UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVE NE BOX 359475 SEATTLE WA 98195 916001537 501(C)(3) 75000 0 RESEARCH GRANT BOSTON CHILDREN'S HOSPITAL PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 57409 0 RESEARCH GRANT BROWN UNIVERSITY 69 BROWN STREET BOX 1911 PROVIDENCE RI 02912 050258809 501(C)(3) 31986 0 RESEARCH GRANT 12 0 PART I, LINE 2: THE TSC ALLIANCE HAS FUNDED $34 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 MERITS, 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. X X X X 0 0 0 1 0 1 0 0 0 STEVEN ROBERDS CHIEF SCIENTIFIC OFFICER 206593 0 26355 0 258 0 7153 0 19156 0 259515 0 0 0 KARI LUTHER ROSBECK PRESIDENT & CEO 191956 2430 25505 323 255 3 6882 0 22028 0 246626 2756 0 0 DEAN RAGER-AGUIAR VICE PRESIDENT, TRANSLATIONAL RESEAR 153455 0 10668 0 138 0 5221 0 21993 0 191475 0 0 0 CYNTHIA ARCURI CHIEF FINANCIAL OFFICER 142007 10963 4642 358 43 3 3199 0 6642 0 156533 11324 0 0 PART I, LINE 5 KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, LISA MOSS, ASHLEY POUNDERS, AND APRIL COOPER ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE. PART I, LINE 6 KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, LISA MOSS, ASHLEY POUNDERS, AND APRIL COOPER ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE. FORM 990, PART III, LINE 4A 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 MORE THAN $34 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $20.1 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $4.8 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $7.9 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $1.3 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 HIS/HER 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 2022, 2,546 PEOPLE WITH TSC WERE ENROLLED IN THE PROJECT FROM AMONG 21 TSC CLINIC 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 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, 2022, THE TSC BIOSAMPLE REPOSITORY HAS ACQUIRED 2,327 BIOSAMPLES: 834 BLOOD SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 395 BUCCAL SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 174 TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 525 BLOOD SAMPLES FROM THE TSC CLINICAL RESEARCH CONSORTIUM COLLABORATIVE PROJECTS, 389 DNA SAMPLES FROM THE TSC AUTISM CENTER OF EXCELLENCE NETWORK AUTISM BIOMARKER STUDY, AND 10 CONTROL SAMPLES. 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 364 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE AWARDED FOUR SEED GRANTS IN 2022, TOTALING $59,324, TO LABS THAT SUBMITTED MERITORIOUS AND INNOVATIVE IDEAS FOR RESEARCH ON TSC BIOSAMPLES. THE TSC ALLIANCE'S WHOLE-GENOME SEQUENCING (WGS) INITIATIVE USING DNA FROM BLOOD SAMPLES IN OUR BIOSAMPLE REPOSITORY SEQUENCED AN ADDITIONAL 48 SAMPLES IN 2022, TOTALING 68 SAMPLES SINCE INCEPTION. THIS INITIATIVE SUPPORTS CLINICAL VALIDATION OF VARIANTS FOUND VIA WGS IN EITHER THE TSC1 OR TSC2 GENE, AND GENETIC RESULTS ARE OFFERED BACK TO PARTICIPANTS ALONG WITH A GENETIC COUNSELING SESSION FREE OF CHARGE TO THE FAMILY TO HELP THEM BETTER UNDERSTAND THEIR UNIQUE TSC DIAGNOSIS AND PROVIDE VALUABLE INFORMATION FOR FUTURE DECISION MAKING SUCH AS FAMILY PLANNING. IN DECEMBER 2021, THE TSC ALLIANCE ADDED THE TSC SELF-REPORT PORTAL TO THE TSC NATURAL HISTORY DATABASE. THIS PORTAL PERMITS 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). AT THE END OF 2022, 69 INDIVIDUALS WERE ENROLLED THROUGH THE SELF-REPORT PORTAL. 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. IN 2022, THE TSC ALLIANCE ENTERED INTO A PARTNERSHIP WITH THE LAM FOUNDATION TO ADD LAM MOUSE MODELS TO THE PRECLINICAL CONSORTIUM. 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 F L7-CRE-TSC2 MICE ON BEHALF OF THE PRECLINICAL CONSORTIUM. THE 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. A MEMBERS MEETING IS HELD ANNUALLY 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. IN 2022, TWO NEW INDUSTRY MEMBERS JOINED THE CONSORTIUM WITH A TOTAL OF 10 ACTIVE INDUSTRY MEMBERS AT THE END OF THE YR FORM 990, PART III, LINE 4B, DESCRIPTION OF PROGRAM SERVICE: 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 2022 THE TSC ALLIANCE FACILITATED 5,164 PEER-TO-PEER SUPPORTS FROM ADULT REGIONAL COORDINATORS (12 VOLUNTEERS IN 8 REGIONS NATIONWIDE), CLINIC AMBASSADORS (14 VOLUNTEERS IN 15 TSC CLINICS AND TSC CENTERS OF EXCELLENCE NATIONWIDE), DEPENDENT ADULT TRANSITION RESOURCE COORDINATORS (28 VOLUNTEERS IN 23 STATES AND PUERTO RICO), EDUCATION PARENT MENTORS (28 VOLUNTEERS IN 19 STATES), AND COMMUNITY ALLIANCE LEADERS (41 VOLUNTEERS IN 27 REGIONS ACROSS THE UNITED STATES) WITH ACTIVE FUTURE LEADERS (8 VOLUNTEERS) WHILE BUILDING A PLACE FOR OUR PAST FUTURE LEADERS TO SERVE AS MENTORS AND SUPPORT (15 VOLUNTEERS) WHO HAVE AGREED TO REMAIN AS LEADERS FOR OTHER YOUNG ADULTS WITH TSC. EDUCATION PARENT MENTORS ATTENDED 29 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 36 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES,THAT PROVIDE SUPPORT AND COMMUNITY EDUCATION IN ALL 50 STATES. THE COMMUNITY PROGRAMS TEAM JOINED TOGETHER WITH THE SCIENCE DEPARTMENT TO PROVIDE FIVE (5) RESEARCH WEBINARS WITH 268 LIVE ATTENDEES AND 915 RECORDED VIEWS WITH 553 LANDING PAGE VIEWS AS OF DECEMBER 31, 2022. THE TSC ALLIANCE'S TSC NAVIGATOR IS 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. IN 2022, THE TOOL HAD 3,071 USERS. FIFTY-FIVE INDIVIDUALS OR FAMILIES WERE ALSO SUPPORTED FOR MEDICATION ACCESS ISSUES VIA OUR TSC NAVIGATOR PROGRAM DURING 2022, DOWN FROM 78 IN 2021, CONSISTENT WITH THE GOAL OF PROACTIVELY HELPING PEOPLE AVOID MEDICATION ACCESS ISSUES. FORM 990, PART III, LINE 4C, DESCRIPTION OF PROGRAM SERVICE: PUBLIC HEALTH EDUCATION INCREASES AWARENESS OF TSC THROUGHOUT THE GENERAL PUBLIC TO BROADEN THE SCOPE OF SUPPORT AND UNDERSTANDING BEYOND TSC INDIVIDUALS AND THEIR FAMILIES; THESE EFFORTS ALSO WORK TO HELP REACH THE UNDIAGNOSED AND NEWLY DIAGNOSED. DURING 2022, THE TSC ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 18,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED 10 EPISODES WITH 2,248 TOTAL LISTENS. SIX ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 17,173 RECIPIENTS. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH AN AVERAGE OF MORE THAN 23,000 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 10,500 MEMBERS FROM AROUND THE WORLD, WHILE ITS TWITTER ACCOUNT HAS 2,650 FOLLOWERS AND INSTAGRAM HAS 3,070 FOLLOWERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE TENTH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE ALSO HEAVILY PROMOTED THE THE SECOND ANNUAL SEIZURE ACTION PLAN AWARENESS WEEK (FEBRUARY 8-14) AND INFANTILE SPASMS AWARENESS WEEK (DECEMBER 1 TO 7). THESE AWARENESS CAMPAIGNS ALONG WITH THE ORGANIZATION'S VARIOUS NEWS RELEASES CULMINATED IN MORE THAN 2.7 BILLION CUMULATIVE IMPRESSIONS. FORM 990, PART VI, SECTION A, LINE 6 MEMBERSHIP IN THE CORPORATION 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 IS 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 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 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 2022: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $57,409 IN GRANTS AND $9,985 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 $13,270 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 $8,085 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 $75,000 OF GRANT PAYMENTS. FORM 990, PART VI, SECTION B, LINE 15 THE 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 19 ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST. FORM 990, PART XI, LINE 9: ROUNDING 2. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS AN AUDIT COMMITTEE, AND STEVEN GOLDSTEIN IS THE AUDIT CHAIR. THIS PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR. FORM 990 AMENDED RETURN THE FORM 990 WAS AMENDED TO INCLUDE THE JOINT COST ALLOCATION THAT WAS INADVERTENTLY LEFT OFF OF PART IX LINE 26. TSC ALLIANCE ENDOWMENT FUND INC 8737 COLESVILLE ROAD NO 400 SILVER SPRING MD 20910 521926919 SUPPORT THE MISSION OF THE TSC ALLIANCE MD 501(C)(3) LINE 12B, II N/A 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0