Form990


Department of the TreasuryInternal Revenue Service
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except private foundations)
MediumBullet Do not enter social security numbers on this form as it may be made public.
MediumBullet Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2021
Open to Public Inspection
A For the 2021 calendar year, or tax year beginning 01-01-2022 , and ending 12-31-2022
BCheck if applicable:
CName of organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
 
Doing business as
TSC ALLIANCE
 
Number and street (or P.O. box if mail is not delivered to street address)
8737 COLLESVILLE ROAD 400
 
Room/suite
City or town, state or province, country, and ZIP or foreign postal code
SILVER SPRING, MD20910
D Employer identification number

95-3018799
E Telephone number

G Gross receipts $ 9,035,766
F Name and address of principal officer:
KARI L ROSBECK
8737 COLLESVILLE ROAD 400
SILVER SPRING,MD20910
I
Tax-exempt status: (   ) LeftBullet (insert no.) or
J
Website:MediumBullet
WWW.TSCALLIANCE.ORG
H(a)
Is this a group return for
subordinates?
H(b)
Are all subordinates
included?
If "No," attach a list. See instructions.
H(c)
Group exemption number MediumBullet  
K Form of organization:  
L Year of formation: 1975
M State of legal domicile: CA
Part I
Summary
Activities & Governance 1 Briefly describe the organization’s mission or most significant activities: FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED.
2 Check this box MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a) ........ 3 30
4 Number of independent voting members of the governing body (Part VI, line 1b) ..... 4 30
5 Total number of individuals employed in calendar year 2021 (Part V, line 2a) ...... 5 27
6 Total number of volunteers (estimate if necessary) ............. 6 2,534
7a Total unrelated business revenue from Part VIII, column (C), line 12 ........ 7a 0
b Net unrelated business taxable income from Form 990-T, Part I, line 11 ......... 7b 0
Revenues Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 5,769,053 7,016,851
9 Program service revenue (Part VIII, line 2g) ......... 2,234,262 2,720,317
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 5,670 2,636
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) 1,007,002 -830,262
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12) 9,015,987 8,909,542
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 948,236 1,032,155
14 Benefits paid to or for members (Part IX, column (A), line 4)..... 0 0
15 Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10) 2,455,940 2,896,346
16a Professional fundraising fees (Part IX, column (A), line 11e) ..... 0 0
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet1,133,515    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e).... 3,465,386 4,135,183
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 6,869,562 8,063,684
19 Revenue less expenses. Subtract line 18 from line 12....... 2,146,425 845,858
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 14,046,866 14,827,937
21 Total liabilities (Part X, line 26)............. 2,437,880 2,373,091
22 Net assets or fund balances. Subtract line 21 from line 20..... 11,608,986 12,454,846
Part II
Signature Block
Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge.
Sign Here
JumboBullet
Signature of officer Date
JumboBullet
Type or print name and title
Paid Preparer Use Only
Print/Type preparer's name
Preparer's signature
Date
PTIN
Firm's name MediumBullet

Firm's EIN MediumBullet
Firm's address MediumBullet



Phone no.
May the IRS discuss this return with the preparer shown above? (see instructions) ..........
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y Form 990 (2021)
Form 990 (2021)
Page 2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response or note to any line in this Part III..............
1
Briefly describe the organization’s 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.
2
Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ? .....................
If "Yes," describe these new services on Schedule O.
3
Did the organization cease conducting, or make significant changes in how it conducts, any program
services? ...........................
If "Yes," describe these changes on Schedule O.
4
Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported.
4a (Code:   ) (Expenses $ 3,793,333 including grants of $ 1,032,155 ) (Revenue $ 2,010,425 )
RESEARCH PROGRAMS. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.
4b (Code:   ) (Expenses $ 1,701,258 including grants of $   ) (Revenue $   )
SUPPORT SERVICES. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.
4c (Code:   ) (Expenses $ 520,059 including grants of $   ) (Revenue $   )
PUBLIC HEALTH. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.
(Code:   ) (Expenses $ 162,724 including grants of $   ) (Revenue $   )
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.
(Code:   ) (Expenses $ 105,440 including grants of $   ) (Revenue $ -1,195,869 )
OTHER PROGRAM SERVICES
4d Other program services (Describe in Schedule O.)
(Expenses $ 268,164 including grants of $   ) (Revenue $ -1,195,869 )
4e Total program service expensesMediumBullet6,282,814
Form 990 (2021)
Form 990 (2021)
Page 3
Part IV
Checklist of Required Schedules
Yes
No
1
Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule AClick to see attachment
List of Attached Documents:
// Content
.....................
1
Yes
 
2
Is the organization required to complete Schedule B, Schedule of Contributors? See instructions. Click to see attachment
List of Attached Documents:
// Content
...
2
Yes
 
3
Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office? If "Yes," complete Schedule C, Part IClick to see attachment
List of Attached Documents:
// Content
.............
3
 
No
4
Section 501(c)(3) organizations. Did the organization engage in lobbying activities, or have a section 501(h) election in effect during the tax year? If "Yes," complete Schedule C, Part IIClick to see attachment
List of Attached Documents:
// Content
.........
4
Yes
 
5
Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Rev. Proc. 98-19? If "Yes," complete Schedule C, Part IIIClick to see attachment
List of Attached Documents:
// Content
..
5
 
No
6
Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts? If "Yes," complete Schedule D, Part IClick to see attachment
List of Attached Documents:
// Content
.........................
6
 
No
7
Did the organization receive or hold a conservation easement, including easements to preserve open space,
the environment, historic land areas, or historic structures? If "Yes," complete Schedule D, Part IIClick to see attachment
List of Attached Documents:
// Content
....
7
 
No
8
Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes,"
complete Schedule D, Part IIIClick to see attachment
List of Attached Documents:
// Content
..............
8
 
No
9
Did the organization report an amount in Part X, line 21 for escrow or custodial account liability; serve as a custodian for amounts not listed in Part X; or provide credit counseling, debt management, credit repair, or debt negotiation services? If "Yes," complete Schedule D, Part IVClick to see attachment
List of Attached Documents:
// Content
..............
9
 
No
10
Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi endowments? If "Yes," complete Schedule D, Part V......
10
Yes
 
11
If the organization’s answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X, as applicable.
a
Did the organization report an amount for land, buildings, and equipment in Part X, line 10? If "Yes," complete
Schedule D, Part VI. Click to see attachment
List of Attached Documents:
// Content
...................
11a
Yes
 
b
Did the organization report an amount for investments—other securities in Part X, line 12 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIClick to see attachment
List of Attached Documents:
// Content
.......
11b
 
No
c
Did the organization report an amount for investments—program related in Part X, line 13 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIIClick to see attachment
List of Attached Documents:
// Content
.......
11c
 
No
d
Did the organization report an amount for other assets in Part X, line 15 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part IXClick to see attachment
List of Attached Documents:
// Content
............
11d
Yes
 
e
Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part XClick to see attachment
List of Attached Documents:
// Content
11e
Yes
 
f
Did the organization’s separate or consolidated financial statements for the tax year include a footnote that addresses the organization’s liability for uncertain tax positions under FIN 48 (ASC 740)? If "Yes," complete Schedule D, Part XClick to see attachment
List of Attached Documents:
// Content
11f
 
No
12a
Did the organization obtain separate, independent audited financial statements for the tax year? If "Yes," complete
Schedule D, Parts XI and XIIClick to see attachment
List of Attached Documents:
// Content
......................
12a
 
No
b
Was the organization included in consolidated, independent audited financial statements for the tax year? If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI and XII is optional Click to see attachment
List of Attached Documents:
// Content
12b
Yes
 
13
Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E
13
 
No
14a
Did the organization maintain an office, employees, or agents outside of the United States? .....
14a
 
No
b
Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more? If "Yes," complete Schedule F, Parts I and IV.........Click to see attachment
List of Attached Documents:
// Content
14b
Yes
 
15
Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or other assistance to or for any foreign organization? If “Yes,” complete Schedule F, Parts II and IV.....Click to see attachment
List of Attached Documents:
// Content
15
Yes
 
16
Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or other assistance to or for foreign individuals? If “Yes,” complete Schedule F, Parts III and IV...Click to see attachment
List of Attached Documents:
// Content
16
 
No
17
Did the organization report a total of more than $15,000 of expenses for professional fundraising services on Part IX, column (A), lines 6 and 11e? If "Yes," complete Schedule G, Part I. See instructions. ....Click to see attachment
List of Attached Documents:
// Content
17
 
No
18
Did the organization report more than $15,000 total of fundraising event gross income and contributions on Part VIII, lines 1c and 8a? If "Yes," complete Schedule G, Part II............ Click to see attachment
List of Attached Documents:
// Content
18
Yes
 
19
Did the organization report more than $15,000 of gross income from gaming activities on Part VIII, line 9a? If "Yes," complete Schedule G, Part III...................Click to see attachment
List of Attached Documents:
// Content
19
 
No
20a
Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H....
20a
 
No
b
If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?
20b
 
 
21
Did the organization report more than $5,000 of grants or other assistance to any domestic organization or domestic government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II.....Click to see attachment
List of Attached Documents:
// Content
21
Yes
 
Form 990 (2021)
Form 990 (2021)
Page 4
Part IV
Checklist of Required Schedules (continued)
Yes
No
22
Did the organization report more than $5,000 of grants or other assistance to or for domestic individuals on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........Click to see attachment
List of Attached Documents:
// Content
22
 
No
23
Did the organization answer "Yes" to Part VII, Section A, line 3, 4, or 5, about compensation of the organization’s current and former officers, directors, trustees, key employees, and highest compensated employees? If "Yes," complete Schedule J....................... Click to see attachment
List of Attached Documents:
// Content
23
Yes
 
24a
Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002? If “Yes,” answer lines 24b through 24d and complete Schedule K. If “No,” go to line 25a...............
24a
 
No
b
Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...
24b
 
 
c
Did the organization maintain an escrow account other than a refunding escrow at any time during the year
to defease any tax-exempt bonds? ...............
24c
 
 
d
Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year?...
24d
 
 
25a
Section 501(c)(3), 501(c)(4), and 501(c)(29) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I ....
25a
 
No
b
Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization’s prior Forms 990 or 990-EZ? If "Yes," complete Schedule L, Part I.......................
25b
 
No
26
Did the organization report any amount on Part X, line 5 or 22 for receivables from or payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons? If "Yes," complete Schedule L, Part II...........
26
 
No
27
Did the organization provide a grant or other assistance to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or employee thereof, a grant selection committee member, or to a 35% controlled entity (including an employee thereof) or family member of any of these persons?
If "Yes," complete
Schedule L, Part III.........................
27
 
No
28
Was the organization a party to a business transaction with one of the following parties (see the Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions):
a
A current or former officer, director, trustee, key employee, creator or founder, or substantial contributor? If "Yes," complete Schedule L, Part IV......................
28a
 
No
b
A family member of any individual described in line 28a? If "Yes," complete Schedule L, Part IV.....
28b
 
No
c
A 35% controlled entity of one or more individuals and/or organizations described in line 28a or 28b? If "Yes," complete Schedule L, Part IV.....................
28c
 
No
29
Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M..
29
 
No
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M .................
30
 
No
31
Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N, Part I
31
 
No
32
Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II........................
32
 
No
33
Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If "Yes," complete Schedule R, Part I............Click to see attachment
List of Attached Documents:
// Content
33
 
No
34
Was the organization related to any tax-exempt or taxable entity? If "Yes," complete Schedule R, Part II, III, or IV, and Part V, line 1.........................Click to see attachment
List of Attached Documents:
// Content
34
Yes
 
35a
Did the organization have a controlled entity within the meaning of section 512(b)(13)?
35a
 
No
b
If ‘Yes’ to line 35a, did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)? If "Yes," complete Schedule R, Part V, line 2 ...
35b
 
 
36
Section 501(c)(3) organizations. Did the organization make any transfers to an exempt non-charitable related organization? If "Yes," complete Schedule R, Part V, line 2............. Click to see attachment
List of Attached Documents:
// Content
36
 
No
37
Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes? If "Yes," complete Schedule R, Part VIClick to see attachment
List of Attached Documents:
// Content
37
 
No
38
Did the organization complete Schedule O and provide explanations on Schedule O for Part VI, lines 11b and 19? Note. All Form 990 filers are required to complete Schedule O. ............
38
Yes
 
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response or note to any line in this Part V...........
Yes
No
1a
Enter the number reported in box 3 of Form 1096. Enter -0- if not applicable ..
1a
29
b
Enter the number of Forms W-2G included on line 1a. Enter -0- if not applicable .
1b
0
c
Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................
1c
Yes
 
Form 990 (2021)
Form 990 (2021)
Page 5
Part V
Statements Regarding Other IRS Filings and Tax Compliance (continued)
2a
Enter the number of employees reported on Form W-3, Transmittal of Wage and
Tax Statements, filed for the calendar year ending with or within the year covered by this return ..................
2a
27
b
If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
Note. If the sum of lines 1a and 2a is greater than 250, you may be required to e-file. See instructions.
2b
Yes
 
3a
Did the organization have unrelated business gross income of $1,000 or more during the year?...
3a
 
No
b
If “Yes,” has it filed a Form 990-T for this year? If “No” to line 3b, provide an explanation in Schedule O...
3b
 
 
4a
At any time during the calendar year, did the organization have an interest in, or a signature or other authority over, a financial account in a foreign country (such as a bank account, securities account, or other financial account)? ..
4a
 
No
b
If "Yes," enter the name of the foreign country: MediumBullet
See instructions for filing requirements for FinCEN Form 114, Report of Foreign Bank and Financial Accounts (FBAR).
5a
Was the organization a party to a prohibited tax shelter transaction at any time during the tax year? ..
5a
 
No
b
Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?
5b
 
No
c
If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ............
5c
 
 
6a
Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible as charitable contributions? ...
6a
 
No
b
If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible? ......................
6b
 
 
7
Organizations that may receive deductible contributions under section 170(c).
a
Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor? ....................
7a
Yes
 
b
If "Yes," did the organization notify the donor of the value of the goods or services provided? .....
7b
Yes
 
c
Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282? .........................
7c
 
No
d
If "Yes," indicate the number of Forms 8282 filed during the year ....
7d
 
e
Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?
7e
 
No
f
Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract? ..
7f
 
No
g
If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required? ......................
7g
 
 
h
If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C? ..........................
7h
 
 
8
Sponsoring organizations maintaining donor advised funds. Did a donor advised fund maintained by the sponsoring organization have excess business holdings at any time during the year? ........
8
 
 
9
Sponsoring organizations maintaining donor advised funds.
a
Did the sponsoring organization make any taxable distributions under section 4966?........
9a
 
 
b
Did the sponsoring organization make a distribution to a donor, donor advisor, or related person?...
9b
 
 
10
Section 501(c)(7) organizations. Enter:
a
Initiation fees and capital contributions included on Part VIII, line 12 ...
10a
 
b
Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities
10b
 
11
Section 501(c)(12) organizations. Enter:
a
Gross income from members or shareholders .........
11a
 
b
Gross income from other sources. (Do not net amounts due or paid to other sources against amounts due or received from them.) ..........
11b
 
12a
Section 4947(a)(1) non-exempt charitable trusts. Is the organization filing Form 990 in lieu of Form 1041?
12a
 
 
b
If "Yes," enter the amount of tax-exempt interest received or accrued during the year.
12b
 
13
Section 501(c)(29) qualified nonprofit health insurance issuers.
a
Is the organization licensed to issue qualified health plans in more than one state? .........
Note. See the instructions for additional information the organization must report on Schedule O.
13a
 
 
b
Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans ....
13b
 
c
Enter the amount of reserves on hand ............
13c
 
14a
Did the organization receive any payments for indoor tanning services during the tax year?.....
14a
 
No
b
If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O..
14b
 
 
15
Is the organization subject to the section 4960 tax on payment(s) of more than $1,000,000 in remuneration or excess parachute payment(s) during the year? ....................
If "Yes," see the instructions and file Form 4720, Schedule N.
15
 
No
16
Is the organization an educational institution subject to the section 4968 excise tax on net investment income? ..
If "Yes," complete Form 4720, Schedule O.
16
 
No
17
Section 501(c)(21) organizations. Did the trust, any disqualified person, or mine operator engage in any activities that would result in the imposition of an excise tax under section 4951, 4952, or 4953? ..
If "Yes," complete Form 6069.
17
 
 
Form 990 (2021)
Form 990 (2021)
Page 6
Part VI
Governance, Management, and Disclosure. For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.
Check if Schedule O contains a response or note to any line in this Part VI..............
Section A. Governing Body and Management
Yes
No
1a
Enter the number of voting members of the governing body at the end of the tax year
1a
30
If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
b
Enter the number of voting members included in line 1a, above, who are independent
1b
30
2
Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other officer, director, trustee, or key employee? .................
2
 
No
3
Did the organization delegate control over management duties customarily performed by or under the direct supervision of officers, directors or trustees, or key employees to a management company or other person? .
3
 
No
4
Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? .
4
 
No
5
Did the organization become aware during the year of a significant diversion of the organization’s assets? .
5
 
No
6
Did the organization have members or stockholders? ................
6
Yes
 
7a
Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or more members of the governing body? ....................
7a
Yes
 
b
Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? ...................
7b
 
No
8
Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:
a
The governing body? .......................
8a
Yes
 
b
Each committee with authority to act on behalf of the governing body? ............
8b
Yes
 
9
Is there any officer, director, trustee, or key employee listed in Part VII, Section A, who cannot be reached at the organization’s mailing address? If "Yes," provide the names and addresses in Schedule O.......
9
 
No
Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)
Yes
No
10a
Did the organization have local chapters, branches, or affiliates? ............
10a
Yes
 
b
If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes?
10b
Yes
 
11a
Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? ............................
11a
Yes
 
b
Describe on Schedule O the process, if any, used by the organization to review this Form 990. .....
12a
Did the organization have a written conflict of interest policy? If "No," go to line 13.......
12a
Yes
 
b
Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ..........................
12b
Yes
 
c
Did the organization regularly and consistently monitor and enforce compliance with the policy? If "Yes," describe on Schedule O how this was done...................
12c
Yes
 
13
Did the organization have a written whistleblower policy? ...............
13
Yes
 
14
Did the organization have a written document retention and destruction policy? .........
14
Yes
 
15
Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision?
a
The organization’s CEO, Executive Director, or top management official ...........
15a
Yes
 
b
Other officers or key employees of the organization ................
15b
Yes
 
If "Yes" to line 15a or 15b, describe the process on Schedule O. See instructions.
16a
Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year? ......................
16a
 
No
b
If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization’s exempt status with respect to such arrangements? ............
16b
 
 
Section C. Disclosure
17
List the states with which a copy of this Form 990 is required to be filedMediumBullet
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
18
Section 6104 requires an organization to make its Form 1023 (1024 or 1024-A, if applicable), 990, and 990-T (section 501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply.
19
Describe in Schedule O whether (and if so, how) the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year.
20
State the name, address, and telephone number of the person who possesses the organization's books and records:
MediumBulletTSC ALLIANCE8737 COLLESVILLE ROAD 400   SILVER SPRING,MD20910 (301) 562-9890
Form 990 (2021)
Form 990 (2021)
Page 7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response or note to any line in this Part VII..............
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees
1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
RoundBullet List all of the organization’s current officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.

RoundBullet List all of the organization’s current key employees, if any. See the instructions for definition of "key employee."
RoundBullet List the organization’s five current highest compensated employees (other than an officer, director, trustee or key employee)
who received reportable compensation (box 5 of Form W-2, Form 1099-MISC, and/or box 1 of Form 1099-NEC) of more than $100,000 from the
organization and any related organizations.

RoundBullet List all of the organization’s former officers, key employees, or highest compensated employees who received more than $100,000
of reportable compensation from the organization and any related organizations.

RoundBullet List all of the organization’s former directors or trustees that received, in the capacity as a former director or trustee of the
organization, more than $10,000 of reportable compensation from the organization and any related organizations.

See the instructions for the order in which to list the persons above.
Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee.
(A)
Name and title 		(B)
Average hours per week (list any hours for related organizations below dotted line) 		(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee) 		(D)
Reportable compensation from the organization (W-2/1099-MISC/1099-NEC) 		(E)
Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC) 		(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(1) PETER CRINO MD PHD......................................................................
CHAIR
 5.00
.................
  		X   X       0 0 0
(2) WILLIAM JOSEPH......................................................................
VICE CHAIR
 5.00
.................
1.00 		X   X       0 0 0
(3) PAUL WAXLAX......................................................................
TREASURER
 5.00
.................
1.00 		X   X       0 0 0
(4) JESSICA KREFTING......................................................................
SECRETARY
 5.00
.................
  		X   X       0 0 0
(5) DEREK BAUER......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(6) JULIE BLUM......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(7) MATT BOLGER......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(8) EDWARD BURKHALTER......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(9) LISA CARLTON......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(10) MARK CARROLL......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(11) SARA CHIEFFO......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(12) DAVID COIT......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(13) MARGARET COX......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(14) JULIAN GANGOLLI......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(15) TANJALA GIPSON......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(16) STEVEN GOLDSTEIN......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
(17) ROB GRANDIA......................................................................
BOARD MEMBER
 2.00
.................
  		X           0 0 0
Form 990 (2021)
Form 990 (2021)
Page 8
Part VII
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (continued)
(A)
Name and title 		(B)
Average hours per week (list any hours for related organizations below dotted line) 		(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee) 		(D)
Reportable compensation from the organization (W-2/1099-MISC/1099-NEC) 		(E)
Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC) 		(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(18) DANA HOLINKA........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(19) LESLEY HOLMES........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(20) DARCY KRUEGER........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(21) PATROSKI LAWSON........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(22) KRISTI LENGYEL........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(23) HEATHER LENS........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(24) LAURA MARKS........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(25) DIANE MCSWAIN........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(26) MUSTAFA SAHIN........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(27) SEAN SHILLINGER........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(28) BRITTANY SMITH........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(29) VANESSA VAZQUEZ........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(30) TARA ZIMMERMAN........................................................................
BOARD MEMBER
 2.00
.......................   		X           0 0 0
(31) KARI LUTHER ROSBECK........................................................................
PRESIDENT & CEO
 54.00
.......................1.00 		    X       217,716 2,756 28,910
(32) CYNTHIA ARCURI........................................................................
CHIEF FINANCIAL OFFICER
 42.00
.......................3.00 		    X       146,692 11,324 9,841
(33) RICHARD GOLLUB........................................................................
CHIEF FINANCIAL OFFICER
 42.00
.......................3.00 		    X       80,583 4,241 8,795
(34) STEVEN ROBERDS........................................................................
CHIEF SCIENTIFIC OFFICER
 45.00
.......................   		      X     233,206 0 26,309
(35) DEAN RAGER-AGUIAR........................................................................
VICE PRESIDENT, TRANSLATIONAL RESEARCH
 45.00
.......................   		        X   164,261 0 27,214
(36) LISA MOSS........................................................................
VICE PRESIDENT, DONOR RELATIONS
 45.00
.......................   		        X   122,204 0 23,858
(37) JAYE ISHAM........................................................................
SENIOR VICE PRESIDENT, STRATEGIC COMMUNICATIONS
 45.00
.......................   		        X   133,868 0 4,136
(38) APRIL COOPER........................................................................
VICE PRESIDENT, COMMUNITY PROGRAMS
 45.00
.......................   		        X   114,370 0 25,298
(39) ASHLEY POUNDERS........................................................................
DIRECTOR OF MEDICAL AFFAIRS
 45.00
.......................   		        X   111,519 0 13,976
1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)...........MediumBullet 1,324,419 18,321 168,337
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organization MediumBullet8
Yes
No
3
Did the organization list any former officer, director or trustee, key employee, or highest compensated employee on line 1a? If "Yes," complete Schedule J for such individual ..............
3
 
No
4
For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000? If "Yes," complete Schedule J for such
individual...........................
4
Yes
 
5
Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization? If "Yes," complete Schedule J for such person ........
5
 
No
Section B. Independent Contractors
1
Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization’s tax year.
(A)
Name and business address 		(B)
Description of services 		(C)
Compensation
PSYCHOGENICS INC

20 GRAMERCY PARK S
NEW YORK,NY10003 		RESEARCH LAB SERVICES 1,194,468
MMS HOLDINGS INC

6880 COMMERCE BLVD
CANTON,MI48187 		RESEARCH LAB SERVICES 121,387
CAVAROCCHI RUSCIO DENNIS & ASSOCIATES

600 MARYLAND AVE SW SUITE 220 EAST
WASHINGTON,DC20024 		GOVERNMENT RELATIONS 116,364
GEBEN COMMUNICATIONS

143 E MAIN STREET SUITE 200
COLUMBUS,OH43215 		MARKING CONSULTING 102,875
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization MediumBullet4
Form 990 (2021)
Form 990 (2021)
Page 9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this Part VIII.............
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512 - 514
Contributions, Gifts, Grants, and OtherAmt Similar Amounts 1a Federated campaigns..1a 51,247
b Membership dues..1b 4,057
c Fundraising events..1c 1,068,063
d Related organizations1d 308,000
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and similar amounts not included above1f 5,585,484
g Noncash contributions included in lines 1a - 1f:$ 1g  
h Total. Add lines 1a-1f.......MediumBullet 7,016,851
Program Service RevenueAmt Business Code
2a CONTRACT REVENUE 900099 1,906,672 1,906,672    
b CONFERENCE REVENUE 900099 813,645 103,753   709,892
c
d
e
f All other program service revenue.        
g Total. Add lines 2a–2f .....MediumBullet 2,720,317
OtherAmtRevenueAmt 3 Investment income (including dividends, interest, and othersimilar amounts) ......MediumBullet 2,382     2,382
4 Income from investment of tax-exempt bond proceedsMediumBullet        
5 Royalties...........MediumBullet        
(ii) Personal (i) Real
6a Gross rents     6a
b Less: rental expenses     6b
c Rental income or (loss)     6c
d Net rental income or (loss).......MediumBullet        
(ii) Other (i) Securities
7a Gross amount from sales of assets other than inventory   1,000 7a
b Less: cost or other basis and sales expenses   746 7b
c Gain or (loss)   254 7c
d Net gain or (loss).........MediumBullet 254     254
8a Gross income from fundraising events (not including $ 1,068,063of contributions reported on line 1c). See Part IV, line 18 ....
8a 491,085
b Less: direct expenses ... 8b 125,478
c Net income or (loss) from fundraising events..MediumBullet 365,607   365,607
9a Gross income from gaming activities.
See Part IV, line 19 ...
9a  
b Less: direct expenses ... 9b  
c Net income or (loss) from gaming activities..MediumBullet        
10a Gross sales of inventory, less
returns and allowances ..
10a  
b Less: cost of goods sold .. 10b  
c Net income or (loss) from sales of inventory..MediumBullet        
Business Code Miscellaneous Revenue
11a CHANGE IN INTEREST OF AFFILIATE 900099 -1,211,361 -1,211,361    
b            
c            
d All other revenue .... 15,492 15,492    
e Total. Add lines 11a–11d ...... MediumBullet -1,195,869
12 Total revenue. See instructions.....MediumBullet 8,909,542 814,556 0 1,078,135
Form 990 (2021)
Form 990 (2021)
Page 10
Part IX
Statement of Functional Expenses
Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).Check if Schedule O contains a response or note to any line in this Part IX..............
Do not include amounts reported on lines 6b,
7b, 8b, 9b, and 10b of Part VIII. 		(A)
Total expenses 		(B)
Program service expenses 		(C)
Management and general expenses 		(D)
Fundraising
expenses
1 Grants and other assistance to domestic organizations and domestic governments. See Part IV, line 21 .... 857,545 857,545
2 Grants and other assistance to domestic individuals. See Part IV, line 22 ...........    
3 Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See Part IV, lines 15 and 16. ............. 174,610 174,610
4 Benefits paid to or for members .......    
5 Compensation of current officers, directors, trustees, and key employees ........... 726,880 439,838 125,197 161,845
6 Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) .........        
7 Other salaries and wages........ 1,744,717 1,055,732 300,508 388,477
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) .... 47,394 27,339 8,117 11,938
9 Other employee benefits ....... 202,902 117,658 34,771 50,473
10 Payroll taxes ........... 174,453 102,086 29,928 42,439
11 Fees for services (non-employees):        
a Management ......        
b Legal ......... 29,466 17,750 3,330 8,386
c Accounting ........... 26,964 16,243 3,047 7,674
d Lobbying ........... 116,364 70,096 13,151 33,117
e Professional fundraising services. See Part IV, line 17    
f Investment management fees ......        
g Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O) 245,601 147,945 27,758 69,898
12 Advertising and promotion .... 8,650 5,841 19 2,790
13 Office expenses ....... 336,605 179,434 20,067 137,104
14 Information technology ...... 201,876 107,508 26,747 67,621
15 Royalties ..        
16 Occupancy ........... 132,836 78,280 23,002 31,554
17 Travel ............ 196,970 149,622 3,105 44,243
18 Payments of travel or entertainment expenses for any federal, state, or local public officials .        
19 Conferences, conventions, and meetings .... 982,138 937,141 6,214 38,783
20 Interest ........... 2,499 3 221 2,275
21 Payments to affiliates .......        
22 Depreciation, depletion, and amortization .. 68,866 44,740 8,315 15,811
23 Insurance ... 11,620 6,854 2,025 2,741
24 Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a PRECLINICAL CONSORTIUM 1,407,092 1,407,092    
b NHD BIOSAMPLE REPOSIT 321,369 321,369    
c DUES AND SUBSCRIPTIONS 40,210 16,979 11,104 12,127
d
e All other expenses 6,057 1,109 729 4,219
25 Total functional expenses. Add lines 1 through 24e 8,063,684 6,282,814 647,355 1,133,515
26 Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here MediumBullet if following SOP 98-2 (ASC 958-720).        
Form 990 (2021)
Form 990 (2021)
Page 11
Part X
Balance Sheet
Check if Schedule O contains a response or note to any line in this Part IX..............
(A)
Beginning of year 		(B)
End of year
Assets 1 Cash–non-interest-bearing ........ 1,459,324 1 1,711,209
2 Savings and temporary cash investments ......... 1,242,438 2 694,859
3 Pledges and grants receivable, net ...... 2,698,495 3 5,280,316
4 Accounts receivable, net ............. 99,173 4 181,490
5 Loans and other receivables from any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .......
  5  
6 Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), and persons described in section 4958(c)(3)(B) ...
  6  
7 Notes and loans receivable, net ...........   7  
8 Inventories for sale or use ............   8  
9 Prepaid expenses and deferred charges ...... 620,148 9 277,696
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a 811,270
b Less: accumulated depreciation 10b 347,998 437,169 10c 463,272
11 Investments—publicly traded securities .   11  
12 Investments—other securities. See Part IV, line 11 .....   12  
13 Investments—program-related. See Part IV, line 11 ..   13  
14 Intangible assets ...............   14  
15 Other assets. See Part IV, line 11 ........... 7,490,119 15 6,219,095
16 Total assets. Add lines 1 through 15 (must equal line 33)... 14,046,866 16 14,827,937
Liabilities 17 Accounts payable and accrued expenses ..... 472,049 17 891,501
18 Grants payable ...   18  
19 Deferred revenue ......... 676,798 19 285,264
20 Tax-exempt bond liabilities .........   20  
21 Escrow or custodial account liability. Complete Part IV of Schedule D   21  
22 Loans and other payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .........
  22  
23 Secured mortgages and notes payable to unrelated third parties ..   23  
24 Unsecured notes and loans payable to unrelated third parties ..   24  
25 Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17 - 24). Complete Part X of Schedule D 1,289,033 25 1,196,326
26 Total liabilities. Add lines 17 through 25.. 2,437,880 26 2,373,091
Net Assets or Fund Balance Organizations that follow FASB ASC 958, check here MediumBullet and complete lines 27, 28, 32, and 33.
27 Net assets without donor restrictions .......... 6,580,605 27 5,151,339
28 Net assets with donor restrictions ........... 5,028,381 28 7,303,507
Organizations that do not follow FASB ASC 958, check here MediumBullet and complete lines 29 through 33.
29 Capital stock or trust principal, or current funds .....   29  
30 Paid-in or capital surplus, or land, building or equipment fund ...   30  
31 Retained earnings, endowment, accumulated income, or other funds   31  
32 Total net assets or fund balances ........... 11,608,986 32 12,454,846
33 Total liabilities and net assets/fund balances ........ 14,046,866 33 14,827,937
Form 990 (2021)
Form 990 (2021)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response or note to any line in this Part XI..............
1
Total revenue (must equal Part VIII, column (A), line 12) ............
1
8,909,542
2
Total expenses (must equal Part IX, column (A), line 25) ............
2
8,063,684
3
Revenue less expenses. Subtract line 2 from line 1 ..............
3
845,858
4
Net assets or fund balances at beginning of year (must equal Part X, line 32, column (A)) ..
4
11,608,986
5
Net unrealized gains (losses) on investments ...............
5
 
6
Donated services and use of facilities .................
6
 
7
Investment expenses .....................
7
 
8
Prior period adjustments .....................
8
 
9
Other changes in net assets or fund balances (explain in Schedule O) ........
9
2
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 32, column (B))
10
12,454,846
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response or note to any line in this Part XII.............
Yes
No
1
Accounting method used to prepare the Form 990:  
If the organization changed its method of accounting from a prior year or checked "Other," explain on
Schedule O.
2a
Were the organization’s financial statements compiled or reviewed by an independent accountant?
2a
 
No
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were compiled or reviewed on a separate basis, consolidated basis, or both:
b
Were the organization’s financial statements audited by an independent accountant?
2b
Yes
 
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were audited on a separate basis, consolidated basis, or both:
c
If "Yes," to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight of the audit, review, or compilation of its financial statements and selection of an independent accountant?
2c
Yes
 
If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.
3a
As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Single Audit Act and OMB Circular A-133?
3a
 
No
b
If "Yes," did the organization undergo the required audit or audits? If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits.
3b
 
 
Form 990 (2021)
Form 990 (2021)
Additional Data


Software ID:  
Software Version:  
Form 990, Special Condition Description:
Special Condition Description
SCHEDULE A
(Form 990)

Department of the Treasury
Internal Revenue Service
Public Charity Status and Public Support
Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
right arrow Attach to Form 990 or Form 990-EZ.
right arrow Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2022
Open to Public
Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Part I
Reason for Public Charity Status (All organizations must complete this part.) See instructions.
The organization is not a private foundation because it is: (For lines 1 through 12, check only one box.)
1
2
3
4
5
6
7
8
9
10
11
12
a
b
c
d
e
f
Enter the number of supported organizations ...............................  
g
Provide the following information about the supported organization(s).
(i) Name of supported organization (ii) EIN (iii) Type of organization (described on lines 1- 10 above (see instructions)) (iv) Is the organization listed in your governing document? (v) Amount of monetary support (see instructions) (vi) Amount of other support (see instructions)
Yes No
Total
 
   
For Paperwork Reduction Act Notice, see the Instructions for
Form 990 or 990-EZ.
Cat. No. 11285F
Schedule A (Form 990) 2022

Schedule A (Form 990) 2022
Page 2
Part II
Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 of Part I or if the organization failed to qualify under Part III. If the organization failed to qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2018 (b) 2019 (c) 2020 (d) 2021 (e) 2022 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. 4,105,376 5,527,543 4,345,011 5,769,053 7,016,851 26,763,834
2 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf....            
3 The value of services or facilities furnished by a governmental unit to the organization without charge..            
4 Total. Add lines 1 through 3 4,105,376 5,527,543 4,345,011 5,769,053 7,016,851 26,763,834
5 The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. 4,752,141
6 Public support. Subtract line 5 from line 4. 22,011,693
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2018 (b) 2019 (c) 2020 (d) 2021 (e) 2022 (f) Total
7 Amounts from line 4.. 4,105,376 5,527,543 4,345,011 5,769,053 7,016,851 26,763,834
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... 13,784 27,444 11,188 3,809 2,382 58,607
9 Net income from unrelated business activities, whether or not the business is regularly carried on..            
10 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. 1,243 714     15,492 17,449
11 Total support. Add lines 7 through 10 26,839,890
12
12
9,192,344
13
First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here ........................................right arrow
Section C. Computation of Public Support Percentage
14
14
82.010 %
15
15
84.730 %
16a
33 1/3% support test—2022. If the organization did not check the box on line 13, and line 14 is 33 1/3% or more, check this box
and stop here. The organization qualifies as a publicly supported organization .......................right arrow
b
33 1/3% support test—2021. If the organization did not check a box on line 13 or 16a, and line 15 is 33 1/3% or more, check this
box and stop here. The organization qualifies as a publicly supported organization ..................... right arrow
17a
10%-facts-and-circumstances test—2022. If the organization did not check a box on line 13, 16a, or 16b, and line 14 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization ............ right arrow
b
10%-facts-and-circumstances test—2021. If the organization did not check a box on line 13, 16a, 16b, or 17a, and line 15 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization ............ right arrow
18
Private foundation. If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions ..................................................... right arrow
Schedule A (Form 990) 2022

Schedule A (Form 990) 2022
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 10 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2018 (b) 2019 (c) 2020 (d) 2021 (e) 2022 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .            
2 Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose            
3 Gross receipts from activities that are not an unrelated trade or business under section 513 .....            
4 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...            
5 The value of services or facilities furnished by a governmental unit to the organization without charge            
6 Total. Add lines 1 through 5            
7a Amounts included on lines 1, 2, and 3 received from disqualified persons            
b Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.            
c Add lines 7a and 7b..            
8 Public support. (Subtract line 7c from line 6.)  
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2018 (b) 2019 (c) 2020 (d) 2021 (e) 2022 (f) Total
9 Amounts from line 6...            
10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..            
b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.            
c Add lines 10a and 10b.            
11 Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on.            
12 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) ..            
13 Total support. (Add lines 9, 10c, 11, and 12.)..            
14
First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here................................................. right arrow
Section C. Computation of Public Support Percentage
15
15
 
16
16
 
Section D. Computation of Investment Income Percentage
17
17
 
18
18
 
19a
33 1/3% support tests-2022. If the organization did not check the box on line 14, and line 15 is more than 33 1/3%, and line 17 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ....... right arrow
b
33 1/3% support tests—2021. If the organization did not check a box on line 14 or line 19a, and line 16 is more than 33 1/3% and line 18 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ..... right arrow
20
Private foundation. If the organization did not check a box on line 14, 19a, or 19b, check this box and see instructions .... right arrow
Schedule A (Form 990) 2022

Schedule A (Form 990) 2022
Page 4
Part IV
Supporting Organizations
(Complete only if you checked a box on line 12 of Part I. If you checked box 12a, of Part I, complete Sections A and B. If you checked box 12b, of Part I, complete Sections A and C. If you checked box 12c, of Part I, complete Sections A, D, and E. If you checked box12d, of Part I, complete Sections A and D, and complete Part V.)
Section A. All Supporting Organizations
Yes
No
1
Are all of the organization’s supported organizations listed by name in the organization’s governing documents?
If "No," describe in Part VI how the supported organizations are designated. If designated by class or purpose,
describe the designation. If historic and continuing relationship, explain.
1
 
 
2
Did the organization have any supported organization that does not have an IRS determination of status under section 509(a)(1) or (2)? If "Yes," explain in Part VI how the organization determined that the supported organization was described in section 509(a)(1) or (2).
2
 
 
3a
Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer lines 3b and 3c below.
3a
 
 
b
Did the organization confirm that each supported organization qualified under section 501(c)(4), (5), or (6) and satisfied the public support tests under section 509(a)(2)? If "Yes," describe in Part VI when and how the organization made the determination.
3b
 
 
c
Did the organization ensure that all support to such organizations was used exclusively for section 170(c)(2)(B) purposes? If "Yes," explain in Part VI what controls the organization put in place to ensure such use.
3c
 
 
4a
Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked box 12a or 12b in Part I, answer lines 4b and 4c below.
4a
 
 
b
Did the organization have ultimate control and discretion in deciding whether to make grants to the foreign supported organization? If “Yes,” describe in Part VI how the organization had such control and discretion despite being controlled or supervised by or in connection with its supported organizations.
4b
 
 
c
Did the organization support any foreign supported organization that does not have an IRS determination under sections 501(c)(3) and 509(a)(1) or (2)? If “Yes,” explain in Part VI what controls the organization used to ensure that all support to the foreign supported organization was used exclusively for section 170(c)(2)(B) purposes.
4c
 
 
5a
Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer lines 5b and 5c below (if applicable). Also, provide detail in Part VI, including (i) the names and EIN numbers of the supported organizations added, substituted, or removed; (ii) the reasons for each such action; (iii) the authority under the organization's organizing document authorizing such action; and (iv) how the action was accomplished (such as by amendment to the organizing document).
5a
 
 
b
Type I or Type II only. Was any added or substituted supported organization part of a class already designated in the organization's organizing document?
5b
 
 
c
Substitutions only. Was the substitution the result of an event beyond the organization's control?
5c
 
 
6
Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (i) its supported organizations, (ii) individuals that are part of the charitable class benefited by one or more of its supported organizations, or (iii) other supporting organizations that also support or benefit one or more of the filing organization’s supported organizations? If “Yes,” provide detail in Part VI.
6
 
 
7
Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in section 4958(c)(3)(C)), a family member of a substantial contributor, or a 35% controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990) .
7
 
 
8
Did the organization make a loan to a disqualified person (as defined in section 4958) not described on line 7? If “Yes,” complete Part I of Schedule L (Form 990).
8
 
 
9a
Was the organization controlled directly or indirectly at any time during the tax year by one or more disqualified persons, as defined in section 4946 (other than foundation managers and organizations described in section 509(a)(1) or (2))? If “Yes,” provide detail in Part VI.
9a
 
 
b
Did one or more disqualified persons (as defined on line 9a) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.
9b
 
 
c
Did a disqualified person (as defined on line 9a) have an ownership interest in, or derive any personal benefit from, assets in which the supporting organization also had an interest? If “Yes,” provide detail in Part VI.
9c
 
 
10a
Was the organization subject to the excess business holdings rules of section 4943 because of section 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer line 10b below.
10a
 
 
b
Did the organization have any excess business holdings in the tax year? (Use Schedule C, Form 4720, to determine whether the organization had excess business holdings).
10b
 
 
Schedule A (Form 990) 2022

Schedule A (Form 990) 2022
Page 5
Part IV
Supporting Organizations (continued)
Yes
No
11
Has the organization accepted a gift or contribution from any of the following persons?
a
A person who directly or indirectly controls, either alone or together with persons described on lines 11b and 11c below, the governing body of a supported organization?
11a
 
 
b
A family member of a person described on 11a above?
11b
 
 
c
A 35% controlled entity of a person described on line 11a or 11b above? If “Yes” to 11a, 11b, or 11c, provide detail in Part VI.
11c
 
 
Section B. Type I Supporting Organizations
Yes
No
1
Did the officers, directors, trustees, or membership of one or more supported organizations have the power to regularly appoint or elect at least a majority of the organization’s directors or trustees at all times during the tax year? If “No,” describe in Part VI how the supported organization(s) effectively operated, supervised, or controlled the organization’s activities. If the organization had more than one supported organization, describe how the powers to appoint and/or remove directors or trustees were allocated among the supported organizations and what conditions or restrictions, if any, applied to such powers during the tax year.
1
 
 
2
Did the organization operate for the benefit of any supported organization other than the supported organization(s) that operated, supervised, or controlled the supporting organization? If “Yes,” explain in Part VI how providing such benefit carried out the purposes of the supported organization(s) that operated, supervised or controlled the supporting organization.
2
 
 
Section C. Type II Supporting Organizations
Yes
No
1
Were a majority of the organization’s directors or trustees during the tax year also a majority of the directors or trustees of each of the organization’s supported organization(s)? If “No,” describe in Part VI how control or management of the supporting organization was vested in the same persons that controlled or managed the supported organization(s).
1
 
 
Section D. All Type III Supporting Organizations
Yes
No
1
Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (i) a written notice describing the type and amount of support provided during the prior tax year, (ii) a copy of the Form 990 that was most recently filed as of the date of notification, and (iii) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?
1
 
 
2
Were any of the organization’s officers, directors, or trustees either (i) appointed or elected by the supported organization(s) or (ii) serving on the governing body of a supported organization? If "No," explain in Part VI how the organization maintained a close and continuous working relationship with the supported organization(s).
2
 
 
3
By reason of the relationship described in line 2 above, did the organization’s supported organizations have a significant voice in the organization’s investment policies and in directing the use of the organization’s income or assets at all times during the tax year? If "Yes," describe in Part VI the role the organization’s supported organizations played in this regard.
3
 
 
Section E. Type III Functionally-Integrated Supporting Organizations
1
Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):
a
b
c
2
Activities Test. Answer lines 2a and 2b below.
Yes
No
a
Did substantially all of the organization’s activities during the tax year directly further the exempt purposes of the supported organization(s) to which the organization was responsive? If "Yes," then in Part VI identify those supported organizations and explain how these activities directly furthered their exempt purposes, how the organization was responsive to those supported organizations, and how the organization determined that these activities constituted substantially all of its activities.
2a
 
 
b
Did the activities described on line 2a, above constitute activities that, but for the organization’s involvement, one or more of the organization’s supported organization(s) would have been engaged in? If "Yes," explain in Part VI the reasons for the organization’s position that its supported organization(s) would have engaged in these activities but for the organization’s involvement.
2b
 
 
3
Parent of Supported Organizations. Answer lines 3a and 3b below.
a
Did the organization have the power to regularly appoint or elect a majority of the officers, directors, or trustees of each of the supported organizations?If "Yes" or "No", provide details in Part VI.
3a
 
 
b
Did the organization exercise a substantial degree of direction over the policies, programs and activities of each of its supported organizations? If "Yes," describe in Part VI. the role played by the organization in this regard.
3b
 
 
Schedule A (Form 990) 2022

Schedule A (Form 990) 2022
Page 6
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations
1
Section A - Adjusted Net Income (A) Prior Year (B) Current Year
(optional)
1 Net short-term capital gain 1    
2 Recoveries of prior-year distributions 2    
3 Other gross income (see instructions) 3    
4 Add lines 1 through 3 4    
5 Depreciation and depletion 5    
6 Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) 6    
7 Other expenses (see instructions) 7    
8 Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) 8    
Section B - Minimum Asset Amount (A) Prior Year (B) Current Year
(optional)
1 Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): 1
a Average monthly value of securities 1a    
b Average monthly cash balances 1b    
c Fair market value of other non-exempt-use assets 1c    
d Total (add lines 1a, 1b, and 1c) 1d    
e Discount claimed for blockage or other factors
(explain in detail in Part VI):  
2 Acquisition indebtedness applicable to non-exempt use assets 2    
3 Subtract line 2 from line 1d 3    
4 Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). 4    
5 Net value of non-exempt-use assets (subtract line 4 from line 3) 5    
6 Multiply line 5 by 0.035 6    
7 Recoveries of prior-year distributions 7    
8 Minimum Asset Amount (add line 7 to line 6) 8    
Section C - Distributable Amount Current Year
1 Adjusted net income for prior year (from Section A, line 8, Column A) 1  
2 Enter 85% of line 1 2  
3 Minimum asset amount for prior year (from Section B, line 8, Column A) 3  
4 Enter greater of line 2 or line 3 4  
5 Income tax imposed in prior year 5  
6 Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) 6  
7
Schedule A (Form 990) 2022

Schedule A (Form 990) 2022
Page 7
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations(continued)
Section D - Distributions Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes 1  
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in
excess of income from activity 		2  
3 Administrative expenses paid to accomplish exempt purposes of supported organizations 3  
4 Amounts paid to acquire exempt-use assets 4  
5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) 5  
6 Other distributions (describe in Part VI). See instructions 6  
7Total annual distributions. Add lines 1 through 6. 7  
8 Distributions to attentive supported organizations to which the organization is responsive (provide
details in Part VI). See instructions 		8  
9 Distributable amount for 2022 from Section C, line 6 9  
10 Line 8 amount divided by Line 9 amount 10  
Section E - Distribution Allocations (see instructions) (i)
Excess Distributions 		(ii)
Underdistributions
Pre-2022 		(iii)
Distributable
Amount for 2022
1 Distributable amount for 2022 from Section C, line 6  
2 Underdistributions, if any, for years prior to 2022 (reasonable cause required-- explain in Part VI).
See instructions.		  
3 Excess distributions carryover, if any, to 2022:
a From 2017.......  
b From 2018.......  
c From 2019.......  
d From 2020.......  
e From 2021.......  
fTotal of lines 3a through e  
g Applied to underdistributions of prior years  
h Applied to 2022 distributable amount  
i Carryover from 2017 not applied (see
instructions) 		 
j Remainder. Subtract lines 3g, 3h, and 3i from line 3f.  
4Distributions for 2022 from Section D, line 7:
$  
a Applied to underdistributions of prior years  
b Applied to 2022 distributable amount  
c Remainder. Subtract lines 4a and 4b from line 4.  
5 Remaining underdistributions for years prior to
2022, if any. Subtract lines 3g and 4a from line 2.
If the amount is greater than zero, explain in Part VI.
See instructions. 		 
6 Remaining underdistributions for 2022. Subtract
lines 3h and 4b from line 1. If the amount is greater
than zero, explain in Part VI. See instructions. 		 
7 Excess distributions carryover to 2023. Add lines
3j and 4c. 		 
8 Breakdown of line 7:
a Excess from 2018.....  
b Excess from 2019.....  
c Excess from 2020.....  
d Excess from 2021.....  
e Excess from 2022.....  
Schedule A (Form 990) (2022)

Schedule A (Form 990) 2022
Page 8
Part VI
Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; Part III, line 12; Part IV, Section A, lines 1, 2, 3b, 3c, 4b, 4c, 5a, 6, 9a, 9b, 9c, 11a, 11b, and 11c; Part IV, Section B, lines 1 and 2; Part IV, Section C, line 1; Part IV, Section D, lines 2 and 3; Part IV, Section E, lines 1c, 2a, 2b, 3a and 3b; Part V, line 1; Part V, Section B, line 1e; Part V Section D, lines 5, 6, and 8; and Part V, Section E, lines 2, 5, and 6. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Return Reference Explanation
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
Schedule A (Form 990) 2022


Additional Data


Software ID:  
Software Version:  
Schedule B
(Form 990)
Department of the Treasury
Internal Revenue Service
Schedule of Contributors

Arrow Bullet Attach to Form 990, 990-EZ, or 990-PF.
Arrow Bullet Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2022
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Organization type (check one):
Filers of:
Section:
Form 990 or 990-EZ






Form 990-PF




Check if your organization is covered by the General Rule or a Special Rule.  
Note: Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.
General Rule
Special Rules
......... Arrow Bullet $  
Caution: An organization that isn't covered by the General Rule and/or the Special Rules doesn't file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its Form 990-EZ
or on its Form 990PF, Part I, line 2, to certify that it doesn't meet the filing requirements of Schedule B (Form 990,
990-EZ, or 990-PF).
For Paperwork Reduction Act Notice, see the Instructions
for Form 990, 990-EZ, or 990-PF.
Cat. No. 30613XSchedule B (Form 990) (2022)
Schedule B (Form 990) (2022) Page 2
Name of organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION 		Employer identification number
95-3018799
Part I
Contributors
Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
RESTRICTED
 
 
 
 
  ,    

$ RESTRICTED


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
Schedule B (Form 990) (2022)
Schedule B (Form 990) (2022)
Page 3
Name of organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION 		Employer identification number

95-3018799
Part II
Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I 		(b)
Description of noncash property given 		(c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
Schedule B (Form 990) (2022)
Schedule B (Form 990) (2022)
Page 4
Name of organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION 		Employer identification number

95-3018799
Part III
Exclusively religious, charitable, etc., contributions to organizations described in section 501(c)(7), (8), or (10) that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) Arrow Bullet$  
Use duplicate copies of Part III if additional space is needed.
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
Schedule B (Form 990) (2022)
Additional Data


Software ID:  
Software Version:  
SCHEDULE C
(Form 990)

Department of the Treasury
Internal Revenue Service
Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527

SchCMd Bullet Complete if the organization is described below. SchCMd Bullet Attach to Form 990 or Form 990-EZ.
SchCMd BulletGo to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2021
Open to Public
Inspection
If the organization answered "Yes" on Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" on Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" on Form 990, Part IV, Line 5 (Proxy Tax) (see separate instructions) or Form 990-EZ, Part V, line 35c (Proxy Tax) (see separate instructions), then
Round Bullet Section 501(c)(4), (5), or (6) organizations: Complete Part III.
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Part I-A
Complete if the organization is exempt under section 501(c) or is a section 527 organization.

1
Provide a description of the organization’s direct and indirect political campaign activities in Part IV. See instructions for definition of “political campaign activities."

2
Political campaign activity expenditures. See instructions ....................................................................SchCMd Bullet
$  
3
Volunteer hours for political campaign activities. See instructions ..................................................................
 

Part I-B
Complete if the organization is exempt under section 501(c)(3).
1
Enter the amount of any excise tax incurred by the organization under section 4955 ................................SchCMd Bullet
$  
2
Enter the amount of any excise tax incurred by organization managers under section 4955 .......................SchCMd Bullet
$  
3
If the organization incurred a section 4955 tax, did it file Form 4720 for this year? .........................................
4a
Was a correction made? ......................................................................................................................
b
If "Yes," describe in Part IV.
Part I-C
Complete if the organization is exempt under section 501(c), except section 501(c)(3).
1
Enter the amount directly expended by the filing organization for section 527 exempt function activities ..... SchCMd Bullet
$  
2
Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................SchCMd Bullet

$  
3
Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b...........SchCMd Bullet

$  
4
Did the filing organization file Form 1120-POL for this year? ...................................................................
5
Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.
(a) Name (b) Address (c) EIN (d) Amount paid from filing organization's funds. If none, enter -0-. (e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.
1
2
3
4
5
6
For Paperwork Reduction Act Notice, see the instructions for Form 990.
Cat. No. 50084S
Schedule C (Form 990) 2021

Schedule C (Form 990) 2021
Page 2
Part II-A
Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).
A Check SchCMd Bulletexpenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet
Limits on Lobbying Expenditures
(The term "expenditures" means amounts paid or incurred.) 		(a) Filing
organization's
totals 		(b) Affiliated group totals
1a Total lobbying expenditures to influence public opinion (grass roots lobbying) ...................... 1,395  
b Total lobbying expenditures to influence a legislative body (direct lobbying) ........................ 161,376  
c Total lobbying expenditures (add lines 1a and 1b) ............................................................ 162,771  
d Other exempt purpose expenditures ............................................................................... 7,856,589  
e Total exempt purpose expenditures (add lines 1c and 1d) .................................................. 8,019,360  
f Lobbying nontaxable amount. Enter the amount from the following table in both
columns.		 550,968  
If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
Not over $500,00020% of the amount on line 1e.
Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
Over $17,000,000$1,000,000.
g Grassroots nontaxable amount (enter 25% of line 1f) ................................................. 137,742  
h Subtract line 1g from line 1a. If zero or less, enter -0-. ................................................ 0  
i Subtract line 1f from line 1c. If zero or less, enter -0-. ................................................ 0  
j If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting
section 4911 tax for this year? ...................................................................................................................

4-Year Averaging Period Under Section 501(h)
(Some organizations that made a section 501(h) election do not have to complete all of the five
columns below. See the separate instructions for lines 2a through 2f.)
Lobbying Expenditures During 4-Year Averaging Period
Calendar year (or fiscal year
beginning in) 		(a) 2018 (b) 2019 (c) 2020 (d) 2021 (e) Total
2a Lobbying nontaxable amount 445,393 423,685 497,465 550,968 1,917,511
b Lobbying ceiling amount
(150% of line 2a, column(e)) 		2,876,267
c Total lobbying expenditures 165,226 123,014 154,139 162,771 605,150
d Grassroots nontaxable amount 111,348 105,921 124,366 137,742 479,377
e Grassroots ceiling amount
(150% of line 2d, column (e))		 719,066
f Grassroots lobbying expenditures 2,491 895 1,127 1,395 5,908
Schedule C (Form 990) 2021


Schedule C (Form 990) 2021
Page 3
Part II-B
Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).
For each "Yes" response on lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.
(a)
Yes|No
(b)
Amount
1
During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:
a
Volunteers? ...........................................................................................................
 
 
b
Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ........
 
 
c
Media advertisements? ...................................................................................................
 
 
 
d
Mailings to members, legislators, or the public? .............................................................................
 
 
 
e
Publications, or published or broadcast statements? ...........................................................
 
 
 
f
Grants to other organizations for lobbying purposes? ..........................................................
 
 
 
g
Direct contact with legislators, their staffs, government officials, or a legislative body? .......................
 
 
 
h
Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ..................
 
 
 
i
Other activities? ...................................................................................................................
 
 
 
j
Total. Add lines 1c through 1i ....................................................................................................
 
2a
Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....
 
 
b
If "Yes," enter the amount of any tax incurred under section 4912 ...........................................
 
c
If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ...................
 
d
If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ........................
 
 
Part III-A
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).
Yes
No
1
Were substantially all (90% or more) dues received nondeductible by members? ...............................................
1
 
 
2
Did the organization make only in-house lobbying expenditures of $2,000 or less? ............................................
2
 
 
3
Did the organization agree to carry over lobbying and political expenditures from the prior year? .................................
3
 
 
Part III-B
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."
1
Dues, assessments and similar amounts from members ......................................................................
1
 
2
Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid).
a
Current year .............................................................................................................................
2a
 
b
Carryover from last year ............................................................................................................
2b
 
c
Total ...........................................................................................................................................
2c
 
3
Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .
3
 
4
If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ......................................................................................................................
4
 
5
Taxable amount of lobbying and political expenditures. See Instructions .........................................
5
 
Part IV
Supplemental Information
Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, lines 1 and 2 (see instructions), and Part ll-B, line 1. Also, complete this part for any additional information.
Return Reference Explanation
Schedule C (Form 990) 2021


Additional Data


Software ID:  
Software Version:  

SCHEDULE D
(Form 990)
Department of the Treasury
Internal Revenue Service
Supplemental Financial Statements
SchDMd Bullet Complete if the organization answered "Yes," on Form 990,
Part IV, line 6, 7, 8, 9, 10, 11a, 11b, 11c, 11d, 11e, 11f, 12a, or 12b.
SchDMd Bullet Attach to Form 990.
SchDMd Bullet Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2021
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Part I
Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" on Form 990, Part IV, line 6.
(a) Donor advised funds (b) Funds and other accounts
1 Total number at end of year .........    
2 Aggregate value of contributions to (during year)    
3 Aggregate value of grants from (during year)    
4 Aggregate value at end of year ........    
5
Did the organization inform all donors and donor advisors in writing that the assets held in donor advised funds are the organization’s property, subject to the organization’s exclusive legal control? ............
6
Did the organization inform all grantees, donors, and donor advisors in writing that grant funds can be used only for charitable purposes and not for the benefit of the donor or donor advisor, or for any other purpose conferring impermissible private benefit? ...................................
Part II
Conservation Easements.
Complete if the organization answered "Yes" on Form 990, Part IV, line 7.
1
Purpose(s) of conservation easements held by the organization (check all that apply).
2
Complete lines 2a through 2d if the organization held a qualified conservation contribution in the form of a conservation easement on the last day of the tax year.
Held at the End of the Year
a Total number of conservation easements ...................... 2a  
b Total acreage restricted by conservation easements .................... 2b  
c Number of conservation easements on a certified historic structure included in (a) ..... 2c  
d Number of conservation easements included in (c) acquired after 7/25/06, and not on a historic structure listed in the National Register ... 2d  
3
Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during the
tax year SchDMd Bullet  
4
Number of states where property subject to conservation easement is located SchDMd Bullet  
5
Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and enforcement of the conservation easements it holds? ............
6
Staff and volunteer hours devoted to monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet  
7
Amount of expenses incurred in monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet $  
8
Does each conservation easement reported on line 2(d) above satisfy the requirements of section 170(h)(4)(B)(i) and section 170(h)(4)(B)(ii)? .............................
9
In Part XIII, describe how the organization reports conservation easements in its revenue and expense statement, and
balance sheet, and include, if applicable, the text of the footnote to the organization’s financial statements that describes
the organization’s accounting for conservation easements.
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets.
Complete if the organization answered "Yes" on Form 990, Part IV, line 8.
1a
If the organization elected, as permitted under FASB ASC 958, not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIII, the text of the footnote to its financial statements that describes these items.
b
If the organization elected, as permitted under FASB ASC 958, to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items:
(i)
Revenue included on Form 990, Part VIII, line 1 .........................SchDMd Bullet $  
(ii)
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
2
If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the
following amounts required to be reported under FASB ASC 958 relating to these items:
a
Revenue included on Form 990, Part VIII, line 1 ..........................SchDMd Bullet $  
b
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 52283D
Schedule D (Form 990) 2021

Schedule D (Form 990) 2021
Page 2
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
3
Using the organization’s acquisition, accession, and other records, check any of the following that are a significant use of its collection items (check all that apply):
a
d
b
e
 
c
4
Provide a description of the organization’s collections and explain how they further the organization’s exempt purpose in
Part XIII.
5
During the year, did the organization solicit or receive donations of art, historical treasures or other similar
assets to be sold to raise funds rather than to be maintained as part of the organization’s collection?...
Part IV
Escrow and Custodial Arrangements. Complete if the organization answered "Yes" on Form 990, Part IV, line 9, or reported an amount on Form 990, Part X, line 21.
1a
Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not
included on Form 990, Part X? ....................................
b If "Yes," explain the arrangement in Part XIII and complete the following table: Amount
c Beginning balance ............................. 1c  
d Additions during the year ............................ 1d  
e Distributions during the year .......................... 1e  
f Ending balance ................................ 1f  
2a
Did the organization include an amount on Form 990, Part X, line 21, for escrow or custodial account liability? ...
b
If "Yes," explain the arrangement in Part XIII. Check here if the explanation has been provided in Part XIII ....
Part V
Endowment Funds.
Complete if the organization answered "Yes" on Form 990, Part IV, line 10.
(a) Current year (b) Prior year (c) Two years back (d) Three years back (e) Four years back
1a Beginning of year balance .... 6,711,748 5,893,521 5,915,805 5,193,934 5,655,555
b Contributions ... 68,423 132,476 54,645 78,962 82,346
c Net investment earnings, gains, and losses -860,036 1,053,588 416,431 959,121 -439,321
d Grants or scholarships ...          
e Other expenditures for facilities
and programs ... 		238,000 333,813 463,721 288,356 50,000
f Administrative expenses .... 181,748 34,024 29,639 27,856 54,646
g End of year balance ...... 5,500,387 6,711,748 5,893,521 5,915,805 5,193,934
2
Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:
a
Board designated or quasi-endowment SchDMd Bullet84.257 %
b
Permanent endowment SchDMd Bullet15.127 %
c
Term endowment SchDMd Bullet0.616 %
The percentages on lines 2a, 2b, and 2c should equal 100%.
3a
Are there endowment funds not in the possession of the organization that are held and administered for the
organization by:

Yes
No
(i) Unrelated organizations .................
3a(i)
 
No
(ii) Related organizations .................
3a(ii)
Yes
 
b
If "Yes" on 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
Yes
 
4
Describe in Part XIII the intended uses of the organization's endowment funds.
Part VI
Land, Buildings, and Equipment.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11a. See Form 990, Part X, line 10.
Description of property (a) Cost or other basis
(investment) 		(b) Cost or other basis (other) (c) Accumulated depreciation (d) Book value
1a Land .....      
b Buildings ....        
c Leasehold improvements   449,272 112,318 336,954
d Equipment ....   281,726 155,408 126,318
e Other .....   80,272 80,272 0
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).)..SchDMdBullet 463,272
Schedule D (Form 990) 2021

Schedule D (Form 990) 2021
Page 3
Part VII
Investments - Other Securities.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11b. See Form 990, Part X, line 12.
(a) Description of security or category
(including name of security)		 (b) Book value (c) Method of valuation:
Cost or end-of-year market value
(1) Financial derivatives.........    
(2) Closely-held equity interests........    
(3)Other
(A)
(B)
(C)
(D)
(E)
(F)
(G)
(H)
Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)Small Bullet  
Part VIII
Investments - Program Related. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11c. See Form 990, Part X, line 13.
(a) Description of investment (b) Book value (c) Method of valuation:
Cost or end-of-year market value
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)Small Bullet  
Part IX
Other Assets.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11d. See Form 990, Part X, line 15.
(a) Description (b) Book value
(1)NET ASSETS OF AFFILIATE 5,500,387
(2)OPERATING LEASE RIGHT-OF-USE ASSET 718,708
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........Small Bullet 6,219,095
Part X
Other Liabilities.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11e or 11f. See Form 990, Part X, line 25.
1.(a) Description of liability (b) Book value
(1) Federal income taxes  
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)Small Bullet 1,196,326
2. Liability for uncertain tax positions. In Part XIII, provide the text of the footnote to the organization's financial statements that reports the organization's liability for uncertain tax positions under FIN 48 (ASC 740). Check here if the text of the footnote has been provided in Part XIII
Schedule D (Form 990) 2021

Schedule D (Form 990) 2021
Page 4
Part XI Reconciliation of Revenue per Audited Financial Statements With Revenue per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total revenue, gains, and other support per audited financial statements ....... 1 8,919,542
2 Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a Net unrealized gains (losses) on investments .... 2a  
b Donated services and use of facilities ......... 2b 10,000
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIII.) ............ 2d  
e Add lines 2a through 2d ..................... 2e 10,000
3 Subtract line 2e from line 1.................. 3 8,909,542
4 Amounts included on Form 990, Part VIII, line 12, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b . 4a  
b Other (Describe in Part XIII.) ........... 4b  
c Add lines 4a and 4b.................... 4c 0
5 Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ...... 5 8,909,542
Part XII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total expenses and losses per audited financial statements ........... 1 8,199,161
2 Amounts included on line 1 but not on Form 990, Part IX, line 25:
a Donated services and use of facilities ......... 2a 10,000
b Prior year adjustments ............ 2b  
c Other losses ................ 2c  
d Other (Describe in Part XIII.) ............ 2d -1
e Add lines 2a through 2d.................... 2e 9,999
3 Subtract line 2e from line 1................... 3 8,189,162
4 Amounts included on Form 990, Part IX, line 25, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b .. 4a  
b Other (Describe in Part XIII.) ............ 4b -125,478
c Add lines 4a and 4b..................... 4c -125,478
5 Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ...... 5 8,063,684
Part XIII
Supplemental Information
Provide the descriptions required for Part II, lines 3, 5, and 9; Part III, lines 1a and 4; Part lV, lines 1b and 2b; Part V, line 4; Part X, line 2; Part XI, lines 2d and 4b; and Part XII, lines 2d and 4b. Also complete this part to provide any additional information.
Return Reference Explanation
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.
Schedule D (Form 990) 2021


Additional Data


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Software Version:  




SCHEDULE F(Form 990)
Department of the Treasury
Internal Revenue Service
Statement of Activities Outside the United States
Right pointing arrow large image Complete if the organization answered "Yes" to Form 990, Part IV, line 14b, 15, or 16.Right pointing arrow large image Attach to Form 990.Right pointing arrow large image Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2022
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Part I
General Information on Activities Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 14b.
1
For grantmakers. Does the organization maintain records to substantiate the amount of its grants and
other assistance, the grantees’ eligibility for the grants or assistance, and the selection criteria used
to award the grants or assistance? . . . . . . . . . . . . . . . . . . . . . . . . .
2
For grantmakers. Describe in Part V the organization’s procedures for monitoring the use of its grants and other assistance outside the United States.
3
Activites per Region. (The following Part I, line 3 table can be duplicated if additional space is needed.)
(a) Region (b) Number of offices in the region (c) Number of employees, agents, and independent contractors in the region (d) Activities conducted in region (by type) (such as, fundraising, program services, investments, grants to recipients located in the region) (e) If activity listed in (d) is a program service, describe specific type of
service(s) in the region		 (f) Total expenditures
for and investments
in the region
EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION   118,360
MIDDLE EAST AND NORTH AFRICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION   56,250
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
3a Sub-total .... 0 0 174,610
b Total from continuation sheets to Part I ... 0 0 0
c Totals (add lines 3a and 3b) 0 0 174,610
For Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2022
Schedule F (Form 990) 2022
Page 2
Part II
Grants and Other Assistance to Organizations or Entities Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 15, for any recipient who received more than $5,000. Part II can be duplicated if additional space is needed.
1 (a) Name of organization (b) IRS code section
and EIN (if applicable)		 (c) Region (d) Purpose of
grant 		(e) Amount of
cash grant 		(f) Manner of
cash
disbursement 		(g) Amount
of noncash
assistance 		(h) Description
of noncash
assistance 		(i) Method of
valuation
(book, FMV,
appraisal, other)
EUROPE (INCLUDING ICELAND & GREENLAND) BIOSAMPLE SEED GRANT AWARD 14,696 WIRE TRANSFER 0    
EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH ON TUBEROUS SCLEROSIS COMPLEX 17,150 WIRE TRANSFER 0    
MIDDLE EAST AND NORTH AFRICA RESEARCH 56,250 WIRE TRANSFER 0    
EUROPE (INCLUDING ICELAND & GREENLAND) YOUNG INVESTIGATOR FELLOWSHIP AWARD 78,014 WIRE TRANSFER 0    
EUROPE (INCLUDING ICELAND & GREENLAND) BIOSAMPLE SEED GRANT AWARD 8,500 WIRE TRANSFER 0    
             
             
             
             
             
             
             
             
             
             
             
2 Enter total number of recipient organizations listed above that are recognized as charities by the foreign country, recognized as tax-exempt by the IRS, or for which the grantee or counsel has provided a section 501(c)(3) equivalency letter .......MediumBullet
0
3 Enter total number of other organizations or entities .......................MediumBullet
4
Schedule F (Form 990) 2022
Schedule F (Form 990) 2022Page 3
Part III
Grants and Other Assistance to Individuals Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 16.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Region (c) Number of recipients (d) Amount of
cash grant 		(e) Manner of cash
disbursement 		(f) Amount of
noncash
assistance 		(g) Description
of noncash
assistance 		(h) Method of
valuation
(book, FMV,
appraisal, other)
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
Schedule F (Form 990) 2022
Schedule F (Form 990) 2022
Page 4
Part IV
Foreign Forms
1 Was the organization a U.S. transferor of property to a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 926, Return by a U.S. Transferor of Property to a Foreign Corporation (see Instructions for Form 926). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
2 Did the organization have an interest in a foreign trust during the tax year? If "Yes," the organization may be required to separately file Form 3520, Annual Return to Report Transactions with Foreign Trusts and Receipt of Certain Foreign Gifts, and/or Form 3520-A, Annual Information Return of Foreign Trust With a U.S. Owner (see Instructions for Forms 3520 and 3520-A; don't file with Form 990). . . . . . . . . . . . . . . . . . . . . . . .
3 Did the organization have an ownership interest in a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 5471, Information Return of U.S. Persons with Respect to Certain Foreign Corporations. (see Instructions for Form 5471). . . . . . . . . . . . . . . . . . . . . . . . . . . .
4 Was the organization a direct or indirect shareholder of a passive foreign investment company or a qualified electing fund during the tax year? If “Yes,” the organization may be required to file Form 8621, Information Return by a Shareholder of a Passive Foreign Investment Company or Qualified Electing Fund. (see Instructions for Form 8621) .
5 Did the organization have an ownership interest in a foreign partnership during the tax year? If "Yes," the organization may be required to file Form 8865, Return of U.S. Persons with Respect to Certain Foreign Partnerships (see Instructions for Form 8865). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
6 Did the organization have any operations in or related to any boycotting countries during the tax year? If "Yes," the organization may be required to separately file Form 5713, International Boycott Report (see Instructions for Form 5713; don't file with Form 990).. . . . . . . . . . . . . . . . . . . . . . . . . . . .
Schedule F (Form 990) 2022
Schedule F (Form 990) 2022
Page 5
Part V
Supplemental Information
Provide the information required by Part I, line 2 (monitoring of funds); Part I, line 3, column (f) (accounting method; amounts of investments vs. expenditures per region); Part II, line 1 (accounting method); Part III (accounting method); and Part III, column (c) (estimated number of recipients), as applicable. Also complete this part to provide any additional information. See instructions.
ReturnReference Explanation
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 F (Form 990) 2022
Additional Data


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SCHEDULE G (Form 990)
Department of the Treasury
Internal Revenue Service
Supplemental Information Regarding
Fundraising or Gaming Activities
Complete if the organization answered "Yes" on Form 990, Part IV, lines 17, 18, or 19, or if the organization entered more than $15,000 on Form 990-EZ, line 6a. right arrowAttach to Form 990 or Form 990-EZ.
right arrowGo to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2022
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Part I
Fundraising Activities.Complete if the organization answered "Yes" on Form 990, Part IV, line 17.
Form 990-EZ filers are not required to complete this part.
1
Indicate whether the organization raised funds through any of the following activities. Check all that apply.
a e
b f
c g
d
2a
Did the organization have a written or oral agreement with any individual (including officers, directors, trustees
or key employees listed in Form 990, Part VII) or entity in connection with professional fundraising services?
b
If "Yes," list the 10 highest paid individuals or entities (fundraisers) pursuant to agreements under which the fundraiser is
to be compensated at least $5,000 by the organization.


(i) Name and address of individual
or entity (fundraiser) 		(ii) Activity (iii) Did fundraiser have custody or control of contributions? (iv) Gross receipts
from activity 		(v) Amount paid to
(or retained by)
fundraiser listed in
col. (i) 		(vi) Amount paid to
(or retained by)
organization
Yes No
             
             
             
             
             
             
             
             
             
             
Total . . . . . . . . . . . . . . . . . . . . right arrow      
3
List all states in which the organization is registered or licensed to solicit contributions or has been notified it is exempt from registration or licensing.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 50083H
Schedule G (Form 990) 2022
Schedule G (Form 990) 2022
Page 2
Part II
Fundraising Events. Complete if the organization answered "Yes" on Form 990, Part IV, line 18, or reported more than $15,000 of fundraising event contributions and gross income on Form 990-EZ, lines 1 and 6b. List events with gross receipts greater than $5,000.









VerticalRevenue
(a) Event #1

WALK-RUN-RIDE EVENTS
(event type) 		(b) Event #2

COMEDY FOR A CURE
(event type) 		(c) Other events

8
(total number) 		(d) Total events
(add col. (a) through col. (c))

1
Gross receipts . . . . .
765,725
588,050
205,373
1,559,148

2
Less: Contributions . . . .
558,425
509,638
0
1,068,063
3 Gross income (line 1 minus
line 2) . . . . . .
207,300
78,412
205,373
491,085



VerticalDirectExpenses
4 Cash prizes . . . . .        
5 Noncash prizes . . . . 31,824 1,654 3,031 36,509
6 Rent/facility costs . . . . 991 10,463 1,428 12,882
7 Food and beverages . . . 3,490 62,124 3,156 68,770
8 Entertainment . . . . 2,635 4,356 325 7,316
9 Other direct expenses . . .        
10 Direct expense summary. Add lines 4 through 9 in column (d) . . . . . . . . . . right arrow 125,477
11 Net income summary. Subtract line 10 from line 3, column (d). . . . . . . . . . right arrow 365,608
Part III
Gaming. Complete if the organization answered "Yes" on Form 990, Part IV, line 19, or reported more than $15,000 on Form 990-EZ, line 6a.
VerticalRevenue
(a) Bingo (b) Pull tabs/Instant
bingo/progressive bingo 		(c) Other gaming (d) Total gaming (add col.(a) through col.(c))

1
Gross revenue . . . . .
 
 
 
 
VerticalDirectExpenses

2
Cash prizes . . . . .
 
 
 
 

3
Noncash prizes . . . .
 
 
 
 

4
Rent/facility costs . . . .
 
 
 
 

5
Other direct expenses . . .
 
 
 
 


6

Volunteer labor . . . .
%
%
%


7
Direct expense summary. Add lines 2 through 5 in column (d) . . . . . . . . . . right arrow
 

8
Net gaming income summary. Subtract line 7 from line 1, column (d). . . . . . . . . right arrow
 

9
Enter the state(s) in which the organization conducts gaming activities:
a
Is the organization licensed to conduct gaming activities in each of these states? . . . . . . . .
b
If "No," explain:
 
10a
Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? . . .
b
If "Yes," explain:
 
Schedule G (Form 990) 2022
Schedule G (Form 990) 2022
Page 3
11
Does the organization conduct gaming activities with nonmembers? . . . . . . . . . . .
12
Is the organization a grantor, beneficiary or trustee of a trust or a member of a partnership or other entity
formed to administer charitable gaming? . . . . . . . . . . . . . . . . .
13
Indicate the percentage of gaming activity conducted in:
a
The organization's facility . . . . . . . . . . . . . . . . . .
13a
%
b
An outside facility . . . . . . . . . . . . . . . . . . . .
13b
%
14
Enter the name and address of the person who prepares the organization's gaming/special events books and records:
Name right arrow
Address right arrow
15a
Does the organization have a contract with a third party from whom the organization receives gaming
revenue? . . . . . . . . . . . . . . . . . . . . . . . .
b
If "Yes," enter the amount of gaming revenue received by the organization right arrow $   and the
amount of gaming revenue retained by the third party right arrow $   .
c
If "Yes," enter name and address of the third party:
Name right arrow
Address right arrow
16
Gaming manager information:
Name right arrow
Gaming manager compensation right arrow $  
Description of services provided right arrow
 
17
Mandatory distributions:
a
Is the organization required under state law to make charitable distributions from the gaming proceeds to
retain the state gaming license? . . . . . . . . . . . . . . . . . . .
b
Enter the amount of distributions required under state law distributed to other exempt organizations or spent
in the organization's own exempt activities during the tax year right arrow$  
Part IV
Supplemental Information. Provide the explanations required by Part I, line 2b, columns (iii) and (v); and Part III, lines 9, 9b, 10b, 15b, 15c, 16, and 17b, as applicable. Also provide any additional information. See instructions.
Return Reference Explanation
Schedule G (Form 990) 2022
Additional Data


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Schedule I
(Form 990)
Department of the Treasury
Internal Revenue Service
Grants and Other Assistance to Organizations,
Governments and Individuals in the United States
Complete if the organization answered "Yes," on Form 990, Part IV, line 21 or 22.
lBullet Attach to Form 990.
lBullet Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2022
Open to Public
Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number
95-3018799
Part I
General Information on Grants and Assistance
1
Does the organization maintain records to substantiate the amount of the grants or assistance, the grantees' eligibility for the grants or assistance, and
the selection criteria used to award the grants or assistance? ........................
2
Describe in Part IV the organization's procedures for monitoring the use of grant funds in the United States.
Part II
Grants and Other Assistance to Domestic Organizations and Domestic Governments. Complete if the organization answered "Yes" on Form 990, Part IV, line 21, for any recipient
that received more than $5,000. Part II can be duplicated if additional space is needed.
(a) Name and address of organization
or government		 (b) EIN (c) IRC section
(if applicable)		 (d) Amount of cash grant (e) Amount of non-cash
assistance		 (f) Method of valuation
(book, FMV, appraisal,
other)		 (g) Description of
noncash assistance		 (h) Purpose of grant
or assistance
(1) UNIVERSITY OF CALIFORNIA LOS ANGELES CAMPUS
10889 WILSHIRE BLVD SUITE 700
LOS ANGELES,CA90095 		95-6006143 501(C)(3) 13,200 0     RESEARCH GRANT
(2) CLEMSON UNIVERSITY
391 COLLEGE AVENUE SUITE 301
CLEMSON,SC29634 		57-6000254 501(C)(3) 17,624 0     RESEARCH GRANT
(3) BRIGHAM & WOMEN'S HOSPITAL
POB 3149
BOSTON,MA02241 		04-2312909 501(C)(3) 179,892 0     RESEARCH GRANT
(4) NATIONAL ORGANIZATION FOR RARE DISORDERS
DEPT 5430 PO BOX 4110
WOBURN,MA01888 		13-3223946 501(C)(3) 75,000 0     TSC TRAVEL AND LODGING ASSISTANCE PROGRAM
(5) NATIONWIDE CHILDREN'S HOSPITAL
DEPT 781653 PO BOX 78000
DETROIT,MI48278 		31-6056230 501(C)(3) 20,000 0     RESEARCH GRANT
(6) UNIVERSITY OF VIRGINIA
1001 N EMMET ST
CHARLOTTESVILLE,VA22903 		54-6001796 501(C)(3) 18,750 0     RESEARCH GRANT
(7) COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK
615 W 131ST STREET 6TH FLOOR MAIL
CODE 8725
NEW YORK,NY10027 		13-5598093 501(C)(3) 18,750 0     RESEARCH GRANT
(8) UNIVERSITY OF MARYLAND BALTIMORE
PO BOX 41428
BALTIMORE,MD21203 		52-6002033 501(C)(3) 75,000 0     RESEARCH GRANT
(9) UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
5323 HARRY HINES BLVD
DALLAS,TX75390 		75-6002868 501(C)(3) 75,000 0     RESEARCH GRANT
(10) UNIVERSITY OF WASHINGTON
4333 BROOKLYN AVE NE BOX 359475
SEATTLE,WA98195 		91-6001537 501(C)(3) 75,000 0     RESEARCH GRANT
(11) BOSTON CHILDREN'S HOSPITAL
PO BOX 414413
BOSTON,MA02241 		04-2774441 501(C)(3) 57,409 0     RESEARCH GRANT
(12) BROWN UNIVERSITY
69 BROWN STREET BOX 1911
PROVIDENCE,RI02912 		05-0258809 501(C)(3) 31,986 0     RESEARCH GRANT
2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image
12
3
Enter total number of other organizations listed in the line 1 table ........................ . Bullet Image
0
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2022

Schedule I (Form 990) 2022
Page 2
Part III
Grants and Other Assistance to Domestic Individuals. Complete if the organization answered "Yes" on Form 990, Part IV, line 22.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Number of
recipients		 (c) Amount of
cash grant		 (d) Amount of
noncash assistance		 (e) Method of valuation (book,
FMV, appraisal, other)		 (f) Description of noncash assistance
(1)
(2)
(3)
(4)
(5)
(6)
(7)
Part IV
Supplemental Information. Provide the information required in Part I, line 2; Part III, column (b); and any other additional information.
Return Reference Explanation
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.
Schedule I (Form 990) 2022



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Schedule J
(Form 990)
Department of the Treasury
Internal Revenue Service
Compensation Information
For certain Officers, Directors, Trustees, Key Employees, and Highest
Compensated Employees
SchJMediumBullet Complete if the organization answered "Yes" on Form 990, Part IV, line 23.
SchJMediumBullet Attach to Form 990.
SchJMediumBullet Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2022
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Part I
Questions Regarding Compensation
Yes
No
1a
Check the appropiate box(es) if the organization provided any of the following to or for a person listed on Form
990, Part VII, Section A, line 1a. Complete Part III to provide any relevant information regarding these items.
b
If any of the boxes on Line 1a are checked, did the organization follow a written policy regarding payment or reimbursement or provision of all of the expenses described above? If "No," complete Part III to explain .....
1b
 
 
2
Did the organization require substantiation prior to reimbursing or allowing expenses incurred by all
directors, trustees, officers, including the CEO/Executive Director, regarding the items checked on Line 1a? ....
2
 
 
3
Indicate which, if any, of the following the filing organization used to establish the compensation of the
organization's CEO/Executive Director. Check all that apply. Do not check any boxes for methods
used by a related organization to establish compensation of the CEO/Executive Director, but explain in Part III.
4
During the year, did any person listed on Form 990, Part VII, Section A, line 1a, with respect to the filing organization or a related organization:
a
Receive a severance payment or change-of-control payment? .............
4a
 
No
b
Participate in, or receive payment from, a supplemental nonqualified retirement plan? .........
4b
 
No
c
Participate in, or receive payment from, an equity-based compensation arrangement? .........
4c
 
No
If "Yes" to any of lines 4a-c, list the persons and provide the applicable amounts for each item in Part III.
Only 501(c)(3), 501(c)(4), and 501(c)(29) organizations must complete lines 5-9.
5
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the revenues of:
a
The organization? ....................
5a
Yes
 
b
Any related organization? .......................
5b
 
No
If "Yes," on line 5a or 5b, describe in Part III.
6
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the net earnings of:
a
The organization? ..................
6a
Yes
 
b
Any related organization? ......................
6b
 
No
If "Yes," on line 6a or 6b, describe in Part III.
7
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization provide any nonfixed
payments not described in lines 5 and 6? If "Yes," describe in Part III ............
7
 
No
8
Were any amounts reported on Form 990, Part VII, paid or accured pursuant to a contract that was
subject to the initial contract exception described in Regulations section 53.4958-4(a)(3)? If "Yes," describe
in Part III ..........................
8
 
No
9
If "Yes" on line 8, did the organization also follow the rebuttable presumption procedure described in Regulations section 53.4958-6(c)? .........................
9
 
 
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50053T
Schedule J (Form 990) 2022

Schedule J (Form 990) 2022
Page 2
Part II
Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees. Use duplicate copies if additional space is needed.
For each individual whose compensation must be reported on Schedule J, report compensation from the organization on row (i) and from related organizations, described in the
instructions, on row (ii). Do not list any individuals that are not listed on Form 990, Part VII.
Note. The sum of columns (B)(i)-(iii) for each listed individual must equal the total amount of Form 990, Part VII, Section A, line 1a, applicable column (D) and (E) amounts for that individual.
(A) Name and Title (B) Breakdown of W-2, 1099-MISC compensation, and/or 1099-NEC (C) Retirement and other deferred compensation (D) Nontaxable
benefits		 (E) Total of columns
(B)(i)-(D) 		(F) Compensation in column (B) reported as deferred on prior Form 990
(i) Base
compensation 		(ii) Bonus & incentive
compensation 		(iii) Other reportable compensation
1STEVEN ROBERDS
CHIEF SCIENTIFIC OFFICER 		(i)

(ii)		 206,593
-------------
0 		26,355
-------------
0 		258
-------------
0 		7,153
-------------
0 		19,156
-------------
0 		259,515
-------------
0 		0
-------------
0
2KARI LUTHER ROSBECK
PRESIDENT & CEO 		(i)

(ii)		 191,956
-------------
2,430 		25,505
-------------
323 		255
-------------
3 		6,882
-------------
0 		22,028
-------------
0 		246,626
-------------
2,756 		0
-------------
0
3DEAN RAGER-AGUIAR
VICE PRESIDENT, TRANSLATIONAL RESEAR 		(i)

(ii)		 153,455
-------------
0 		10,668
-------------
0 		138
-------------
0 		5,221
-------------
0 		21,993
-------------
0 		191,475
-------------
0 		0
-------------
0
4CYNTHIA ARCURI
CHIEF FINANCIAL OFFICER 		(i)

(ii)		 142,007
-------------
10,963 		4,642
-------------
358 		43
-------------
3 		3,199
-------------
0 		6,642
-------------
0 		156,533
-------------
11,324 		0
-------------
0
Schedule J (Form 990) 2022

Schedule J (Form 990) 2022
Page 3
Part III
Supplemental Information
Provide the information, explanation, or descriptions required for Part I, lines 1a, 1b, 3, 4a, 4b, 4c, 5a, 5b, 6a, 6b, 7, and 8, and for Part II. Also complete this part for any additional information.
Return Reference Explanation
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.
Schedule J (Form 990) 2022

Additional Data


Software ID:  
Software Version:  
SCHEDULE O
(Form 990)

Department of the Treasury
Internal Revenue Service
Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ or to provide any additional information.
MediumBullet Attach to Form 990 or 990-EZ.
MediumBullet Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2021
Open to Public
Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Return Reference Explanation
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.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990) 2021


Additional Data


Software ID:  
Software Version:  
SCHEDULE R
(Form 990)
Department of the Treasury
Internal Revenue Service
Related Organizations and Unrelated Partnerships
MediumBulletComplete if the organization answered "Yes" on Form 990, Part IV, line 33, 34, 35b, 36, or 37.
MediumBulletAttach to Form 990.
MediumBullet Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047
2021
Open to Public Inspection
Name of the organization
NATIONAL TUBEROUS SCLEROSIS
ASSOCIATION
Employer identification number

95-3018799
Part I
Identification of Disregarded Entities. Complete if the organization answered "Yes" on Form 990, Part IV, line 33.
(a)
Name, address, and EIN (if applicable) of disregarded entity


(b)
Primary activity


 		(c)
Legal domicile (state
or foreign country)

 		(d)
Total income


 		(e)
End-of-year assets


 		(f)
Direct controlling
entity










Part II
Identification of Related Tax-Exempt Organizations. Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related tax-exempt organizations during the tax year.
(a)
Name, address, and EIN of related organization


(b)
Primary activity


 		(c)
Legal domicile (state
or foreign country)

 		(d)
Exempt Code section


 		(e)
Public charity status
(if section 501(c)(3))

 		(f)
Direct controlling
entity

 		(g)
Section 512(b)(13) controlled entity?
Yes No
(1)TSC ALLIANCE ENDOWMENT FUND INC
8737 COLESVILLE ROAD NO 400

SILVER SPRING,MD20910
52-1926919 		SUPPORT THE MISSION OF THE TSC ALLIANCE MD 501(C)(3) LINE 12B, II N/A
 
No












For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50135Y
Schedule R (Form 990) 2021
Schedule R (Form 990) 2021
Page 2
Part III
Identification of Related Organizations Taxable as a Partnership. Complete if the organization answered "Yes" on Form 990, Part IV, line 34, because it had one or more related organizations treated as a partnership during the tax year.
(a)
Name, address, and EIN of
related organization



 		(b)
Primary activity




 		(c)
Legal
domicile
(state or foreign
country)


 		(d)
Direct controlling
entity



 		(e)
Predominant income(related, unrelated, excluded from tax under sections 512-514)

(f)
Share of total income




 		(g)
Share of end-of-year
assets



 		(h)
Disproprtionate allocations?




 		(i)
Code V-UBI
amount in box 20 of
Schedule K-1
(Form 1065)
 		(j)
General or
managing
partner?



 		(k)
Percentage
ownership
Yes No Yes No












Part IV
Identification of Related Organizations Taxable as a Corporation or Trust. Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related organizations treated as a corporation or trust during the tax year.
(a)
Name, address, and EIN of
related organization
 		(b)
Primary activity
 		(c)
Legal
domicile
(state or foreign
country)
 		(d)
Direct controlling
entity
 		(e)
Type of entity
(C corp, S corp,
or trust) 		(f)
Share of total income
 		(g)
Share of end-of-year
assets
 		(h)
Percentage
ownership
 		(i)
Section 512(b)(13) controlled entity?
Yes No












Schedule R (Form 990) 2021
Schedule R (Form 990) 2021
Page 3
Part V
Transactions With Related Organizations. Complete if the organization answered "Yes" on Form 990, Part IV, line 34, 35b, or 36.
Note. Complete line 1 if any entity is listed in Parts II, III, or IV of this schedule.
Yes
No
1 During the tax year, did the orgranization engage in any of the following transactions with one or more related organizations listed in Parts II-IV?
a Receipt of (i) interest, (ii) annuities, (iii) royalties, or (iv) rent from a controlled entity .....................
1a
 
No
b Gift, grant, or capital contribution to related organization(s) ............................
1b
 
No
c Gift, grant, or capital contribution from related organization(s) ............................
1c
Yes
 
d Loans or loan guarantees to or for related organization(s) ............................
1d
 
No
e Loans or loan guarantees by related organization(s) ............................
1e
 
No
f Dividends from related organization(s) ............................
1f
 
No
g Sale of assets to related organization(s) ............................
1g
 
No
h Purchase of assets from related organization(s) ............................
1h
 
No
i Exchange of assets with related organization(s) ............................
1i
 
No
j Lease of facilities, equipment, or other assets to related organization(s) .......................
1j
 
No
k Lease of facilities, equipment, or other assets from related organization(s) ......................
1k
 
No
l Performance of services or membership or fundraising solicitations for related organization(s) .....................
1l
 
No
m Performance of services or membership or fundraising solicitations by related organization(s) .................
1m
 
No
n Sharing of facilities, equipment, mailing lists, or other assets with related organization(s) ...................
1n
Yes
 
o Sharing of paid employees with related organization(s) ............................
1o
Yes
 
p Reimbursement paid to related organization(s) for expenses ............................
1p
 
No
q Reimbursement paid by related organization(s) for expenses ............................
1q
 
No
r Other transfer of cash or property to related organization(s) ............................
1r
 
No
s Other transfer of cash or property from related organization(s) ............................
1s
 
No
2
If the answer to any of the above is "Yes," see the instructions for information on who must complete this line, including covered relationships and transaction thresholds.
(a)
Name of related organization 		(b)
Transaction
type (a-s) 		(c)
Amount involved 		(d)
Method of determining amount involved





Schedule R (Form 990) 2021
Schedule R (Form 990) 2021
Page 4
Part VI
Unrelated Organizations Taxable as a Partnership. Complete if the organization answered "Yes" on Form 990, Part IV, line 37.
Provide the following information for each entity taxed as a partnership through which the organization conducted more than five percent of its activities (measured by total assets or gross revenue) that was not a related organization. See instructions regarding exclusion for certain investment partnerships.
(a)
Name, address, and EIN of entity 		(b)
Primary activity 		(c)
Legal domicile
(state or foreign
country) 		(d)
Predominant income (related, unrelated, excluded from tax under sections 512-514)

(e)
Are all partners
section
501(c)(3)
organizations? 		(f)
Share of total income




 		(g)
Share of
end-of-year
assets 		(h)
Disproprtionate allocations? 		(i)
Code V-UBI
amount in box 20
of Schedule K-1
(Form 1065) 		(j)
General or
managing
partner? 		(k)
Percentage
ownership
Yes No Yes No Yes No






























Schedule R (Form 990) 2021
Schedule R (Form 990) 2021
Page 5
Part VII
Supplemental Information
Provide additional information for responses to questions on Schedule R. See instructions.
Return Reference Explanation
Schedule R (Form 990) 2021

Additional Data


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