Form 990 for tax year 2022

What the amendment changed

Compared with the latest return for 2022 , filed 17 September 2024. matched by us Only the Part I totals and the names listed in Part VII are compared. We relate returns by organization, tax year and form, and order them by each return's own timestamp; the filer's own "amended return" checkbox is a separate fact.

Both are the same on the two returns, so the amendment changed something else.

Totals

Total revenue

$8,909,542

Total expenses

$8,063,684

Contributions and grants received

$7,016,851

Grants paid

$1,032,155

Program service revenue

$2,720,317

Investment income

$2,636

Other revenue

-$830,262

Total assets, end of year

$14,827,937

Total liabilities, end of year

$2,373,091

Net assets or fund balances, end of year

$12,454,846

Program services expenses (Part IX)

$6,282,814

Management and general expenses

$647,355

Fundraising expenses

$1,133,515

Program service expenses (Part III)

$6,282,814

Program services were 77.9% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• RESEARCH PROGRAMS. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.

  Expenses $3,793,333 · Grants $1,032,155 · Revenue $2,010,425

• SUPPORT SERVICES. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.

  Expenses $1,701,258

• PUBLIC HEALTH. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.

  Expenses $520,059

• 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.

  Expenses $162,724

• OTHER PROGRAM SERVICES

  Expenses $105,440 · Revenue -$1,195,869

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• BRIGHAM & WOMEN'S HOSPITAL

  $179,892

  RESEARCH GRANT

• NATIONAL ORGANIZATION FOR RARE DISORDERS

  $75,000

  TSC TRAVEL AND LODGING ASSISTANCE PROGRAM

• UNIVERSITY OF MARYLAND BALTIMORE

  $75,000

  RESEARCH GRANT

• UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER

  $75,000

  RESEARCH GRANT

• UNIVERSITY OF WASHINGTON

  $75,000

  RESEARCH GRANT

• BOSTON CHILDREN'S HOSPITAL

  $57,409

  RESEARCH GRANT

• BROWN UNIVERSITY

  $31,986

  RESEARCH GRANT

• NATIONWIDE CHILDREN'S HOSPITAL

  $20,000

  RESEARCH GRANT

• UNIVERSITY OF VIRGINIA

  $18,750

  RESEARCH GRANT

• COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK

  $18,750

  RESEARCH GRANT

The 10 largest by cash amount. The API serves every itemized grant.

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

• TSC ALLIANCE ENDOWMENT FUND INC

  501(C)(3) · SUPPORT THE MISSION OF THE TSC ALLIANCE · MD

Provenance

Return type

form_990

Tax year

2022

Filed

14 April 2023

IRS schema version

2022v5.0

Source object

202301049349301205

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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