2025-04-11T08:26:26-05:00 2024-12-31 470900880 CALIBRE CPA GROUP PLLC 7501 WISCONSIN AVENUE SUITE 1200 WEST BETHESDA MD 20814 990 2024-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION NATI 3015629890 8737 COLESVILLE ROAD 400 SILVER SPRING MD 20910 KARI L ROSBECK PRESIDENT & CEO 3015629890 2025-04-11 1 1 ERIN CRANMER P01712644 2023319880 2025-04-11 2024 2025-03-06 01:10:19Z X TSC ALLIANCE KARI L ROSBECK 8737 COLESVILLE ROAD 400 SILVER SPRING MD 20910 12010053 0 X WWW.TSCALLIANCE.ORG X 1975 CA TO IMPROVE QUALITY OF LIFE FOR EVERYONE AFFECTED BY TUBEROUS SCLEROSIS COMPLEX BY CATALYZING NEW TREATMENTS, DRIVING RESEARCH TOWARD A CURE AND EXPANDING ACCESS TO LIFELONG SUPPORT. 27 27 26 373 0 0 6747948 7048334 2815353 2105029 36732 52809 416350 794723 10016383 10000895 845292 730927 0 0 3024376 3153884 0 0 1348202 4597980 4775207 8467648 8660018 1548735 1340877 16085768 17254701 2088420 1888588 13997348 15366113 X TO IMPROVE QUALITY OF LIFE FOR EVERYONE AFFECTED BY TUBEROUS SCLEROSIS COMPLEX BY CATALYZING NEW TREATMENTS, DRIVING RESEARCH TOWARD A CURE AND EXPANDING ACCESS TO LIFELONG SUPPORT. 0 0 4810946 725619 2098994 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 $39 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $20.9 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $5.5 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $11.6 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $1.8 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/RESEARCHERS/GRANTS-FUNDING/.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 2024, THE NATURAL HISTORY DATABASE CONTAINED 2,780 PARTICIPANTS ENROLLED IN THE PROJECT FROM AMONG 22 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 FOR DECADES TO COME. 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 2024, THE BIOSAMPLE REPOSITORY HAS ACQUIRED 2,917 BLOOD, BUCCAL (CHEEK) SWAB, OR TISSUE SAMPLES. SINCE INCEPTION, 3,370 PORTIONS OF SAMPLES HAVE BEEN DISTRIBUTED TO 50 DISTINCT RESEARCHERS FOR 59 DISTINCT PROJECTS.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 557 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE AWARDED THREE SEED GRANTS IN 2024, TOTALING $43,625, 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 131 SAMPLES IN 2024, TOTALING 242 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 2024, 83 INDIVIDUALS HAD COMPLETED THE TAND-SQ 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. THE PRECLINICAL CONSORTIUM ENDED 2024 WITH 10 ACTIVE INDUSTRY PARTNERS, INCREASING THE TOTAL NUMBER TO 24 INDUSTRY PARTNERS SINCE 2016. 1034068 SUPPORT SERVICES. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION. 478028 PUBLIC HEALTH. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION. 391662 5308 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 ALABAMA, MISSOURI, AND MARYLAND, RESULTING IN AT LEAST $1.275 MILLION IN STATE APPROPRIATIONS. THE 2024 MARCH ON CAPITOL HILL WAS HELD FEBRUARY 28 WITH CONGRESSIONAL MEETINGS TAKING PLACE THROUGH MID-MARCH. MORE THAN 130 PEOPLE PARTICIPATED IN OVER 367 IN-PERSON AND VIRTUAL MEETINGS. OUR HOUSE DEAR COLLEAGUE LETTER FOR FY25 WAS CO-SPONSORED BY REPRESENTATIVES FITZPATRICK (R-PA) AND RASKIN (D-MD) AND CLOSED WITH 185 SIGNERS. THE SENATE DEAR COLLEAGUE LETTER WAS CO-SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) AND CLOSED WITH 41 SIGNERS.TOTAL FUNDING FOR THE TSCRP HAS BEEN $121 MILLION SINCE 2002, INCLUDING A $8 MILLION APPROPRIATION FOR FY24. 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 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 FIVE GLOBAL PARTNERSHIPS, INCLUDING TSC ALLIANCE OF ISRAEL, TS CANADA ST, TSC ALLIANCE OF MEXICO, HUNGARIAN FOUNDATION FOR TUBEROUS SCLEROSIS, AND TSC ALLIANCE OF INDIA. THE TSC ALLIANCE RECOGNIZES 14 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. THE TSC ALLIANCE EXHIBITED AT THE AMERICAN EPILEPSY SOCIETY ANNUAL MEETING. STAFF MEMBERS AND A VOLUNTEER SHARED EDUCATIONAL MATERIALS WITH ATTENDEES WHO VISITED THE BOOTH, AND STAFF PRESENTED DATA AT A POSTER SESSION, ATTENDED SCIENTIFIC SESSIONS, AND HELD MANY MEETINGS WITH ACADEMIC AND INDUSTRY PARTNERS. STAFF ALSO PARTICIPATED IN THE TSC SPECIAL INTEREST GROUP SESSION, AND THE TSC ALLIANCE HOSTED MORE THAN 100 PEOPLE AT A RECEPTION WHICH INCLUDED A VIDEO PRESENTATION OF HOW PEOPLE'S LIVES HAVE BEEN IMPACTED BY TSC, HOW RESEARCH HAS MADE TREMENDOUS IMPACT, AND HOW MUCH IS LEFT TO BE DONE TO CURE, OR FULLY TREAT, TSC.THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 24 PROFESSIONAL MEETINGS IN 2024 INCLUDING RESEARCH AMERICA ANNUAL ADVOCACY AWARDS, AMGEN FUTURE OF UCDS ADVISORY BOARD MEETING, ATS CORPORATE ADVISORY BOARD MEETING, BOSTON CHILDREN'S HOSPITAL TRANSLATIONAL RESEARCH SYMPOSIUM, EAN CONGRESSIONAL BRIEFING, INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE), HEALTH RESEARCH ALLIANCE: CONVENING ON BULLYING AND HARASSMENT FORUM, INFANTILE SPASMS ACTION NETWORK GOVERNANCE MEETING, BRIDGEBIO TOWN HALL, TANDEM MINI SYMPOSIUM, MNK ADVISORY BOARD MEETING, NINDS NONPROFIT FORUM, RARE DISEASE DIVERSITY COALITION, TSCI WORKSHOP, TAND CONSORTIUM, TSC REPRODUCTIVE & PERINATAL TASK FORCE WORKSHOP, CPATH GLOBAL IMPACT CONFERENCE, GLOBAL GENES RARE SUMMIT, BOSTON CHILDREN'S HOSPITAL TRANSLATIONAL RESEARCH SYMPOSIUM, PCORI ANNUAL MEETING, RDCRN FALL MEETING, AES, AND THE MILKEN INSTITUTE FUTURE OF HEALTH SUMMIT. 391662 5308 6714704 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 1 0 0 0 0 1 0 0 0 1 35 0 1 26 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 27 27 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 COLESVILLE ROAD 400 SILVER SPRING MD 20910 WILLIAM JOSEPH BOARD CHAIR 5.00 X X 0 0 0 PAUL WAXLAX VICE CHAIR 5.00 1.00 X X 0 0 0 BRITTANY SMITH TREASURER 5.00 1.00 X X 0 0 0 LESLEY HOLMES SECRETARY 5.00 X X 0 0 0 DEREK BAUER DIRECTOR 2.00 X 0 0 0 FRANCES BRIONES DIRECTOR 2.00 X 0 0 0 JULIE BLUM DIRECTOR 2.00 X 0 0 0 MATT BOLGER DIRECTOR 2.00 X 0 0 0 CHIP BURKHALTER DIRECTOR 2.00 X 0 0 0 LISA CARLTON DIRECTOR 2.00 X 0 0 0 MARK CARROLL DIRECTOR 2.00 X 0 0 0 JULIAN GANGOLLI DIRECTOR 2.00 X 0 0 0 TANJALA GIPSON DIRECTOR 2.00 X 0 0 0 JONATHAN GOLDSTEIN DIRECTOR 2.00 X 0 0 0 STEVEN GOLDSTEIN DIRECTOR 2.00 X 0 0 0 SHAFALI JESTE DIRECTOR 2.00 X 0 0 0 JESSICA KREFTING DIRECTOR 2.00 X 0 0 0 DARCY KRUEGER DIRECTOR 2.00 X 0 0 0 PATROSKI LAWSON DIRECTOR 2.00 X 0 0 0 KRISTI LENGYEL DIRECTOR 2.00 X 0 0 0 HEATHER LENS DIRECTOR 2.00 X 0 0 0 LAURA MARKS DIRECTOR 2.00 X 0 0 0 MUSTAFA SAHIN DIRECTOR 2.00 X 0 0 0 SEAN SHILLINGER DIRECTOR 2.00 X 0 0 0 ANDREW SPERLING DIRECTOR 2.00 X 0 0 0 MARK SPOTTS DIRECTOR 2.00 X 0 0 0 VANESSA VAZQUEZ DIRECTOR 2.00 X 0 0 0 KARI LUTHER ROSBECK PRESIDENT & CEO 54.00 1.00 X 229751 2321 29822 CYNTHIA ARCURI CHIEF FINANCIAL OFFICER 45.00 1.00 X 184176 9693 8033 STEVEN ROBERDS CHIEF SCIENTIFIC OFFICER 45.00 X 243817 0 28877 DEAN RAGER-AGUIAR VICE PRESIDENT, TRANSLATIO 45.00 X 183132 0 31118 LISA MOSS VICE PRESIDENT, DONOR RELA 45.00 X 129161 0 26747 JAYE ISHAM CHIEF OUTREACH OFFICER 45.00 X 154028 0 5930 1124065 12014 130527 6 0 1 0 PSYCHOGENICS INC 20 GRAMERCY PARK SOUTH NEW YORK NY 10003 RESEARCH LAB SERVICES 2196755 VAN ANDEL RESEARCH INSTITUTE 333 BOSTWICK AVE NE GRAND RAPIDS MI 49503 RESEARCH LAB SERVICES 275408 CAVAROCCHI RUSCIO DENNIS & ASSOCIATES 600 MARYLAND AVE SW SUITE 220 EAST WASHINGTON DC 20024 GOVERNMENT RELATIONS 121737 3 31703 600 2545477 239000 4231554 313610 7048334 CONTRACT REVENUE 900099 2098994 2098994 CONFERENCE REVENUE 900099 6035 6035 2105029 48323 48323 1484318 1479832 4486 4486 4486 379883 2545477 529326 -149443 -149443 CHANGE IN INTEREST OF AFFILIATE 900099 938684 938684 5482 5482 944166 10000895 2098994 0 853567 594369 594369 136558 136558 724475 452435 105121 166919 1953740 1174594 279508 499638 57523 35779 5835 15909 229969 143107 24484 62378 188177 117170 21250 49757 29766 20071 2797 6898 23775 16031 2234 5510 119856 80816 11264 27776 282498 185960 27854 68684 16311 7480 133 8698 363869 151657 14085 198127 162481 73818 17754 70909 189963 116454 20733 52776 316059 239428 8366 68265 371834 322368 32160 17306 73012 55807 4905 12300 17889 10985 5285 1619 PRECLINICAL CONSORTIUM 2287598 2287598 NHD BIOSAMPLE REPOSIT 456639 456639 DUES AND SUBSCRIPTIONS 34570 12249 12943 9378 29087 23331 401 5355 8660018 6714704 597112 1348202 1487710 3485780 700650 706764 4306013 2754156 350534 119421 283821 337110 1124880 490322 393961 634558 1752986 1298765 6810093 7918147 16085768 17254701 813246 725038 189493 194359 1085681 969191 2088420 1888588 X 6372958 7971055 7624390 7395058 13997348 15366113 16085768 17254701 1340877 27888 0 X X 0 1 X 1 0 X 4345011 5769053 7016851 6496698 6734724 30362337 4345011 5769053 7016851 6496698 6734724 30362337 5015227 25347110 11188 3809 2382 36732 52809 106920 15492 995 5482 21969 30491226 11955636 0.83130 0.83480 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4886 234707 239593 7086111 7325704 516285 129071 0 0 497465 550968 515868 516285 2080586 3120879 154139 162771 188741 239593 745244 124366 137742 128967 129071 520146 780219 1127 1395 1345 4886 8753 5821187 554586 671714 239000 48616 6759871 5500387 141816 812509 572625 60900 5821187 6711748 68423 -860036 238000 181748 5500387 5893521 132476 1053588 333813 34024 6711748 5915805 54645 416431 463721 29639 5893521 0.84870 0.14580 0.00550 0 1 1 449272 194003 255269 595336 216047 379289 80272 80272 0 634558 NET ASSETS OF AFFILIATE 6759871 OPERATING LEASE RIGHT-OF-USE ASSET 584651 DUE FROM AFFILIATE 573625 7918147 OPERATING LEASE LIABILITY 970571 DUE FROM RELATED PARTY -1380 969191 10052325 27888 23542 51430 10000895 0 10000895 8683560 23542 23542 8660018 0 8660018 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 ENDOWMENT FUND AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE. 1 EUROPE (INCLUDING ICELAND AND GREENLAND) 2 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION 131250 SOUTH ASIA 1 0 GRANTS TO RECIPIENTS LOCATED IN THE REGION 5308 3 0 0 0 3 0 136558 0 136558 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH ON TUBEROUS SCLEROSIS COMPLEX 75000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH ON TUBEROUS SCLEROSIS COMPLEX 56250 WIRE TRANSFER 0 SOUTH ASIA TO COVER COSTS OF CLOSING THE TSC GLOBAL ALLIANCE 5308 WIRE TRANSFER 0 3 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. STEP FORWARD TO CURE TSC 781985 781985 21874 7438 11301 8952 50TH ANNIVERSARY GALA 1525220 1231266 293954 30000 131920 188715 8 618155 532226 85929 5672 57174 65163 1117 2925360 2545477 379883 57546 196532 265179 10069 529326 -149443 1 BAYLOR COLLEGE OF MEDICINE PO BOX 301207 DALLAS TX 70690 741613878 501(C)(3) 75000 0 RESEARCH GRANT EMORY UNIVERSITY PO BOX 935084 ATLANTA GA 31193 580566256 501(C)(3) 18750 0 RESEARCH GRANT NORTHWESTERN UNIVERSITY 633 CLARK ST ROOM G547 EVANSTON IL 60208 362167817 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) 56250 0 RESEARCH GRANT UNIVERSITY OF CALIFORNIA IRVINE 228 ALDRICH HALL IRVINE CA 92697 952226406 501(C)(3) 75000 0 RESEARCH GRANT UNIVERSITY OF MASSACHUSETTS 55 LAKE AVENUE NORTH SUITE S1-859 WORCESTER MA 01655 542084125 501(C)(3) 18750 0 RESEARCH GRANT UNIVERSITY OF TEXAS DALLAS 800 WEST CAMPBEL ROAD SP2 27 RICHARDSON TX 75080 751305566 501(C)(3) 75000 0 RESEARCH GRANT NATIONAL ORGANIZATION FOR RARE DISORDERS DEPT 5430 PO BOX 4110 WOBURN MA 01888 133223946 501(C)(3) 175000 0 TSC TRAVEL AND LODGING ASSISTANCE PROGRAM BOSTON CHILDREN'S HOSPITAL PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 81869 0 RESEARCH GRANT 9 0 PART I, LINE 2: THE TSC ALLIANCE HAS FUNDED $39 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 221251 0 22566 0 0 0 7509 0 21368 0 272694 0 0 0 KARI LUTHER ROSBECK PRESIDENT & CEO 207898 2100 21853 221 0 0 7220 0 22602 0 259573 2321 0 0 DEAN RAGER-AGUIAR VICE PRESIDENT, TRANSLATIO 163575 0 19557 0 0 0 5863 0 25255 0 214250 0 0 0 CYNTHIA ARCURI CHIEF FINANCIAL OFFICER 166658 8771 17518 922 0 0 5814 0 2219 0 192209 9693 0 0 JAYE ISHAM CHIEF OUTREACH OFFICER 140182 0 13846 0 0 0 4609 0 1321 0 159958 0 0 0 LISA MOSS VICE PRESIDENT, DONOR RELA 116082 0 13079 0 0 0 4178 0 22569 0 155908 0 0 0 PART I, LINE 5 KARI LUTHER ROSBECK, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, AND LISA MOSS, 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, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, AND LISA MOSS ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE. X MEDICAL EQUIPMENTS 4 313610 FMV 0 0 0 PART I, COLUMN (B): AMOUNT REPORTED IS THE NUMBER OF ITEMS CONTRIBUTED. FORM 990, PART III, LINE 4A, DESCRIPTION OF PROGRAM SERVICE: 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. THE CONSORTIUM TESTED NINE UNIQUE COMPOUNDS IN 2024, RAISING THE TOTAL TESTED TO 91 SINCE 2016. MANY COMPOUNDS WILL ENTER PRECLINICAL TESTING, THOUGH ONLY SOME WILL ADVANCE TO CLINICAL TESTING DUE TO LACK OF EFFICACY AND SAFETY. 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 $40 MILLION BY THE NATIONAL INSTITUTES OF HEALTH (NIH) AND FOOD AND DRUG ADMINISTRATION (FDA) THROUGH COMPETITIVE GRANT PROCESSES. TSC ALLIANCE PERSONNEL SERVE ON THE LEADERSHIP TEAM FOR THE CONSORTIUM, ACTIVELY TRACK ENROLLMENT, AND RAISE COMMUNITY AWARENESS TO HELP IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL STUDIES. TSC ALLIANCE ALSO PROVIDES SUPPLEMENTAL FINANCIAL SUPPORT TO ACCELERATE OR EXPAND NIH-FUNDED STUDIES. IN 2020, THE TSC ALLIANCE PROVIDED $200,000 SUPPLEMENTAL FUNDING FOR TSC-STEPS (STOPPING TSC ONSET AND PROGRESSION 2B: SIROLIMUS TSC EPILEPSY PREVENTION STUDY), WHICH IS ONGOING. THE TSC ALLIANCE CONTINUES TO EDUCATE THE COMMUNITY ABOUT THIS PIVOTAL TRIAL. TWENTY-EIGHT INFANTS HAVE BEEN ENROLLED TO DATE AND TWENTY-THREE BIOSPECIMENS COLLECTED. THE TSC ALLIANCE IS ALSO PROVIDING SUPPLEMENTAL FUNDING AND COLLECTING BLOOD SAMPLES FOR THE DEVELOPMENTAL SYNAPTOPATHIES CONSORTIUM (DSC), AN NIH-FUNDED PROJECT THAT INCLUDES STUDIES OF TSC AND THE RELATED RARE DISORDERS PHELAN-MCDERMID SYNDROME AND PTEN HAMARTOMA SYNDROME. THESE THREE RARE DISEASES SEEM TO AFFECT CERTAIN SHARED PATHWAYS INFLUENCING THE DEVELOPMENT OF BRAIN CONNECTIONS, OR SYNAPSES. RESEARCHERS IN THIS STUDY ARE TRYING TO FIND EARLIER SIGNS OF AUTISM SPECTRUM DISORDER (ASD) AND INTELLECTUAL DISABILITY (ID) TO GAIN A BETTER UNDERSTANDING OF ASD/ID IN INDIVIDUALS WITH TSC AND ENABLE EFFECTIVE TREATMENTS AND INTERVENTIONS FOR ASD/ID TO BE FOUND. THE DSC WAS RENEWED IN 2019 FOR A SECOND 5-YEAR FUNDING PERIOD. THE TSC ALLIANCE FUNDS A PORTION OF CLINICAL RESEARCH COORDINATORS' SALARIES AT 5 SITES. IN 2024, THE TSC ALLIANCE AWARDED AN ADDITIONAL 12 MONTHS OF FUNDING, $163,737 IN TOTAL, TO SUPPORT COLLECTION OF ADDITIONAL DATA AND BIOSAMPLES FROM AUGUST 2024 THROUGH JULY 2025. THANKS TO A GIFT FROM THE RAMESH AND KALPANA BHATIA FAMILY FOUNDATION, THE TSC ALLIANCE CREATED ANYA'S ACCELERATOR TO FOCUS ON FURTHERING TRANSLATIONAL RESEARCH ON TAND. THE TSC ALLIANCE HOSTED AN INNOVATION WORKSHOP IN APRIL 2023, WHICH FOCUSED ON IDENTIFYING BIOMARKERS AND PREDICTORS OF SPECIFIC ASPECTS OF TAND THROUGH COLLABORATIVE AND INCLUSIVE ANALYSIS OF EXISTING BIOSAMPLES AND DATA VIA METABOLOMIC, GENETIC (RNA-SEQ), OR OTHER METHODS. AFTER THIS INNOVATIVE WORKSHOP, WE BEGAN PLOTTING A COURSE TO IDENTIFY FLUID-BASED BIOMARKERS TO IMPROVE CLINICAL TRIALS AND CLINICAL CARE ASSOCIATED WITH TAND. IN 2024 WE COMPLETED ANALYSIS OF 84 SAMPLES FROM THE DSC PROJECT UTILIZING PROTEIN ANALYSIS USING AN 11K PROTEIN ASSAY AT SOMALOGIC AND WHOLE GENOME SEQUENCING. IN 2024 THE TSC ALLIANCE APPROVED A PROPOSAL TO BEGIN IN 2025 THE ANYA'S ACCELERATOR PATIENT-REPORTED OUTCOME MEASURE (PROM) PROJECT, LED IN COLLABORATION WITH AGNIES VAN EEGHEN, MD, PHD OF UMC AMSTERDAM. HER PROJECT WILL FOCUS ON THE HARMONIZATION OF PRO MEASURES USED BOTH IN STANDARD OF CARE AND CLINICAL TRIALS TO STANDARDIZE THE ASSESSMENT OF SYMPTOMS UNDER THE TAND UMBRELLA. IN MARCH 2024, THE TSC ALLIANCE HOSTED A REPRODUCTIVE AND PERINATAL HEALTH (RPH) WORKSHOP IN MEMPHIS, TENNESSEE. THE WORKSHOP GATHERED MORE THAN 25 TSC AND LAM EXPERTS AND STAKEHOLDERS TO DISCUSS PRESENT AND FUTURE CLINICAL RECOMMENDATIONS FOR WOMEN WITH TSC AND/OR LAM WHO BECOME PREGNANT. OUTCOMES INCLUDED: THE DEVELOPMENT OF A SURVEY TO GATHER COMMUNITY PERSPECTIVES ON PREGNANCY AND TSC, DRAFTING A CALL-TO-ACTION AND RISK STRATIFICATION MANUSCRIPT TO BE SUBMITTED FOR PUBLICATION, AND IDENTIFYING POTENTIAL COLLABORATORS WITH EXISTING PREGNANCY DATABASES TO GATHER MORE CLINICAL EVIDENCE TOWARDS ESTABLISHING CLINICAL GUIDELINES. FORM 990, PART III, LINE 4B, DESCRIPTION OF PROGRAM SERVICE: SUPPORT SERVICES IS DEDICATED TO SUPPORTING INDIVIDUALS AND FAMILIES AFFECTED BY TSC THROUGH OUTREACH PROGRAMS, SUPPORT SERVICES, IMPROVED MEDICAL ACCESS, AND EDUCATIONAL RESOURCES. IN 2024, THE TSC ALLIANCE FULLY IMPLEMENTED A NEW COMMUNITY SUPPORT MODEL THAT PUTS THE TSC COMMUNITY CENTER FOCUSING ON LOCAL RESOURCES, SUPPORT SERVICES, AND ACCESS TO MEDICAL CARE IN CONJUNCTION WITH ENERGIZING THE CURRENT AND FUTURE VOLUNTEER LEADERS TO PROPEL THE TSC ALLIANCE TO THE NEXT LEVEL. THIS MODEL UNITED 36 COMMUNITY ALLIANCES AND ORGANIZED THEM INTO 14 COMMUNITY REGIONS, LED BY MORE THAN 138 DEDICATED LEADERS THROUGHOUT THE UNITED STATES. THE COMMUNITY PROGRAMS TEAM INVESTED MORE THAN 997 TRAINING HOURS TO OUR LEADERS, TO ENSURE THEY WERE WELL EQUIPPED TO SUPPORT AND EMPOWER THE TSC COMMUNITY. AS A RESULT, WE PROVIDED 3,473 PEER-TO-PEER SUPPORT ENGAGEMENTS AND FACILITATED 88 SCHOOL MEETINGS, WHICH INVOLVED TSC 101 TRAINING AND IEP CONSULTATIONS. IN ADDITION, FIVE "ASK AN ADVOCATE" WEBINARS ATTRACTED 609 REGISTRANTS. THE COMMUNITY PROGRAMS TEAM COLLABORATED WITH KEY STAFF TO HOST TWO RESEARCH AND CORPORATE PARTNER WEBINARS. THESE WEBINARS ATTRACTED 142 LIVE ATTENDEES AND GARNERED 267 RECORDED VIEWS AS OF DECEMBER 31, 2024. THE TSC ALLIANCE HOSTED TWO EDUCATIONAL REGIONAL TSC CONFERENCES HELD IN CHAPEL HILL, NC AND PALO ALTO, CA AND TWO TRANSITION WORKSHOPS IN MEMPHIS, TN AND SALT LAKE CITY, UT. THESE CONFERENCES ATTRACTED 245 PARTICIPANTS. 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 2024, AS PART OF THE TSC ALLIANCE'S WEBSITE REDESIGN, TSC NAVIGATOR WAS EXPANDED ACROSS MORE PAGES ON THE WEBSITE. TSC NAVIGATOR CONTENT HAD 72,249 PAGE VIEWS IN 2024 FROM 37,869 USERS. SUPPORT NAVIGATORS ASSISTED 290 FAMILIES INCLUDING 23 ONE-HOUR LONG SUPPORT NAVIGATOR CALLS. NINE INDIVIDUALS OR FAMILIES WERE ALSO SUPPORTED FOR MEDICATION ACCESS ISSUES VIA OUR TSC NAVIGATOR PROGRAM DURING 2024, UP FROM 5 IN 2023, 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 2024, THE TSC ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 19,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED THREE EPISODES WITH 1,391 TOTAL LISTENS. SIX ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 16,838 RECIPIENTS. IN JANUARY 2024, THE TSC DEBUTED A REDESIGNED WEBSITE FEATURING STREAMLINED NAVIGATION. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH A MONTHLY AVERAGE OF 22,641 PAGE VIEWS. 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 11,172 MEMBERS FROM AROUND THE WORLD, WHILE ITS X ACCOUNT HAS 2,659 FOLLOWERS, LINKEDIN HAS 2,453 FOLLOWERS AND INSTAGRAM HAS 3,921 FOLLOWERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE 12TH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE ALSO HEAVILY PROMOTED INFANTILE SPASMS AWARENESS WEEK (DECEMBER 1 TO 7). THESE AWARENESS CAMPAIGNS ALONG WITH THE ORGANIZATION'S VARIOUS NEWS RELEASES AND SOCIAL MEDIA OUTREACH EFFORTS CULMINATED IN MORE THAN 1.1 BILLION CUMULATIVE IMPRESSIONS AND ENGAGEMENTS. 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 2024. 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 2024: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $81,869 IN GRANTS AND $9,340 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 $4,255 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 $7,765 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, 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 XII, LINE 2C: THIS PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR. 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 TSC ALLIANCE ENDOWMENT FUND INC C 239000 ACTUAL CASH RECEIVED