Fog 990 2003990s.foundationcenter.org/990_pdf_archive/132/...J Organization type cthack«mNonel1 " W 501(c) ( 3 ) " Pnsex no) Ej 4947(a)(1) or [:j 52 K Check here " D if the organization's

Fog 990 Department of Me Treasury Internal Revenue Service

Return of Organization Exempt From Income Tax Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except black lung

benefit trust or private foundation) " The organization may have to use a copy of this return to satisfy state reporting requirements

2003 2 0 0 A fog the 2003 calendar dear, or tax year beginning APR 1 2003 and ending MAR 31 ,

C Name of organization B Check it please applicable: use IRS

Address label or change print � ATIONAL DOWN SYNDROME SOCIETY =change ~ Number and street (or P.O . box ft mail is not delivered to street address)

"Iu",m specific 6 6 6 BROADWAY DRnd InsWo-

,a�m do �,. City or town, state or country, and ZIP + 4 0�, '°°° NEW YORK NY 10012

" Section 501(c)(3) organizations and 4947(a)(1) nonexempt charitable trusts must attach a completed Schedule A (Form 990 or 990-EZ) .

G WebsHe : "WWW . NDSS . ORG J Organization type cthack«mNonel1 " W 501(c) ( 3 ) " Pnsex no ) Ej 4947(a)(1) or [:j 52

K Check here " D if the organization's gross receipts are normally not more than $25,000 The

organization need not file a return with the IRS, but If the organization received a Form 990 Package in the mail, d should file a return without financial data Some states require a complete return . 1110.

M Check 10, L Gross recei p ts, Add lines 6b, 8b, 9b, and 10b t0 line 12 . 4 , 268 , 142 . Sch B (Fi

J if the organization is not required to attach 990, 990-EZ, or 990-PF)

pert # Revenue Expenses, and Changes in Net Assets or Fund Balances

1 Contributions, gifts, grants, and similar amounts received . a Direct public support . . . 1 a 1

b Indirect public support . . . . 1b

e Government contributions (grants) _ . . 1 c d Total (add lines to through 1c) (cash $ 1 , .9 3 3 , 7 6 2 . noncash $

2 Program service revenue including government fees and contracts (from Part VII, line 93)

3 Membership dues and assessments O 4 Interest on sarongs and temporary cash investments 5 Dividends and interest tom securities . . e a Gross rents . . . SEE STATEMENT 1 6a

b less: rental expenses . . . . . . SEE STATEMENT 2 6b

c Net rental income or (loss) (subtract line 6b from line 6a) 7 Other investment income (describe 8 a Gross amount from sales of assets other A Securities

m than inventory . . . 570 , 632 . 8a b Less : cost or other basis and sales expenses 579 , 589 . 8b

<8 , 957 . >8c c Gam or (loss) (attach schedule) . . . . d Net gam or (loss) (combine line 8c, columns (A) and (B)) . STMT 3

9 Special events and activities (attach schedule) If any amount is from gaming, check here a Gross revenue (not including $ 13 7 , 6 2 5 . of contributions

la 1,933,762 . I 2 I 224,266 .

45,200 . 9,417 .

35,783 .

<8 .957 .>

reported on pine 1a) . . . . . . 9a 1 , 443 , 825 . b Less: direct expenses other than fundraising expenses . . _ . . . 9b 397,072 .

. c_ . Nat income-or (loss) from ecial events (subtract line 9b from line 9a) , , SEE STATEMENT 4 9c 1 , 046 , 753 -- ~ ~ 1

0 a~(~io~s~al~s~~nuentorv .,la9s returns and allowances . . . . . . . . . ~ 10a I b ---Less: cost-of goods

so'

(p i . . _ _ ._ . . . . . . . . . . . . . . . . . . . . . IU D D I e , ~p~b p~ofi~~,or ~M y~fr ~ les of inventory (attach schedule) (subtract line 10b from line 10a) ~er revenue (from Pa ~ line 103) . . . .

.

18 0@s 1h5 ~~ e r'm line 4, column (B)) . . . . . . . - .-- - . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 y _L34-Martag men and general (from line 44, column (C)) . . . , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

15 Fundraising (from line 4A, column (D)) . . . . . . . . . . . . 15 CL - u 16 Payments to affiliates (attach schedule) . . . . __ __ 16 L

17 Total expenses add lines 16 and 44 column A . . . . . . . . . . . . . . . . . . 17 18 Excess or (defied) for the year (subtract line 17 from line 12) 1 B

m N 19 Net assets or fund balances at beginning of year (from line 73, column (A)) 19 Z 20 Other changes in net assets or fund balances (attach explanation) . . . . . SEE STATEMENT 5 20 d

21 Net assets or fund balances at end of ear combine lines 18, 19, and 20 . . . . . . . . . . . . . . . . 21

iz_3°°a, LHA For Paperwork Reduction Act Notice, see the separate Instructions . i

08461015 733030 2244 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1

D Employer Identification number

13-2992567 Room/suitp E Telephone number

212-763-4362 f Aaoundrq rtethad = Cash FXI Accrual

omen s

,

H and I are not applicable to section 527 organizations. H(a) Is this a group return for affiliates? 0 Yes [XI No H(b) If *Yes,* enter number of affiliates 10, H(c) Are all affiliates included? N/A 0 Yes D No

(if 'No,* attach a list .) H(d) Is this a separate return filed by an or-

aamzation covered by a arouo rulma? n Yes n No

933,762 .

50,357 .

100 . J ~ G V L ~ V V Z ~

1,630,056 . 160,597 . 366,584 .

2,157,237 . 1,124,827 . 1r759r 16 .

120,211 . V V Z F J J Z

Form 990 (2003) '7

AL DOWN SYNDROME SOCIETY 13-2992567 All organizations must complete column (A) Columns (B), (C), and (D) are required for section 501(c)(3) Page 2

FunCtional Ex erases and (4) organizations and section 4947(a) 1) nonexempt chaMable trusts but optional for others . L~1, 11U Functional Expenses and (4) organizations and section 4947(a) ( 1) nonexempt chantable trusts but optional for others . Do not Include amounts reported on line (A) Total (B) Program (C) Management (D) Fundraising

6b. 8b. 9b. 10b, o~ 16 of Pert l. serwrat and general

22 Grants and allocations (attach schedule) . . . . . . . . . . . . � = 7 7 , 6 6 2 . � o�cwr, s

28 Specific assistance to individuals (attach schedule) 24 Benefits paid to or for members (attach schedule) 25 Compensation of officers, directors, etc . . . 28 Other salaries and wages . . . . . . . . . . 27 Pension plan contributions . . . . . . . . . . . . . 28 Other employee benefits . . . . . . . . . . . . 29 Payroll taxes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 Professional fundraising fees 31 Accounting fees . . . . . . . 32 Legal fees , . . . . . . . . . . . . 33 Supplies . . . . . . . . . . . . 34 Telephone . . . . . . 35 Postage and shipping _ . 38 Occupancy . . . . . . . . . . . . . . 37 Equipment rental and maintenance 38 Printing and publications . . . . . . 39 Travel . . . . . . . . 40 Conferences, conventions, and meetings 41 Interest . . . . . . . . . 42 Depreciation, depletion, etc (attach schedule) 43 Other expenses not covered above (itemize):

a b e d

43,727 .1 32,402 .1 4,897 .E 6,428 .

333,486 . d PUBLIC AWARENESS - SEE STATEMENT

(Grants and allocations a ) f 77,536 . STATEMENT 9 (Grants and allocations $ ~ 1,042,004 .

ould equal line 44, column (B), Program services) " 1,630,056 . Form 990 (2003)

2 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1

Service Total of

08461015 733030 2244

71,447 .

77,662 .1 77 ,662 .0-TATRMZNT 8

144 467 . 105 460 . 39 , 007 . 0 . 826 512 . 609 r 330 . 68 1` 413 . 148 769 .

102 t 768 . 77 , 427 . 11 r 570 . 13 , 771 . 89,432 . 65,107 . 10,016 . 14,309 .

18,900 .1 14,962 .1 650 .1 3,288 .

31 r 003 . 23 , 419 . 3 , 235 . 4 , 349 . 63 , 176 . 40 r 145 . 3 , 236 . 19 , 795 . 44 , 583 . 33 , 036 . 4 0` 993 . 6 , 554 . 28,168 . 20 , 872 . 3 , 155 . 4 , 141 .

130 293 . 75 , 107 . 1 , 504 . 53 , 682 . 43 , 795 . 30 550 . 2 , 624 . 10 , 621 .

187,691 . 187,691 .

e SEE STATEMENT 6 43e 325 060 . 236 886 . 7 , 297 .1 80 , 877 . v~+~bl~ +~~~nis 13-1s as 2,157, 237 . 1, 630 056 . 160r597 .1 366 , 584 . as ° me~~«~~~a c '~p~22 4

Joint Costa . Check " 0 if you are following SOP 98-2 . Are any joint costs from a combined educational campaign and fundraising solicitation reported m (B) Program services? 1 D Yes EKI No

If *Yes,' enter (I) the aggregate amount of these joint costs $ ; (Ii) the amount allocated to Program services $

III the amount allocated to Management and general $ and Iv the amount allocated to Fundraisin part /i# Statement of Program Service Accomplishments what is the organization's primary exempt purpose? " SEE STATEMENT 7

Pro ram Service

All organizations must describe their exempt purpose achievements in a dear and congas manner State the number of clients smell, publications issued, etc Discuss ~xp BfISBS

achievements that ere not measurable. (Section 501(c)p) and (4) organizations end 4947(e~(1) nonexempt charitable trusts must also niter the amount of grants end (~q) (Requ ired

end 4~94 7(a d J(1) allocations to others ) trusts . but optional log others )

a UPDATE - SEE STATEMENT

and allocations S 77,662 .)l 105,583 . b NEWS AND VIEWS - SEE STATEMENT

c NATIONAL CONFERENCE - SEE STATEMENT

Form 990 (2103) NATIONAL DOWN SYNDROME SOCIETY 13-2992567 Page 3

~ Balance Sheets

(A) (B) Beginning of year End of year

193 476 . 45 847 r 117 . 46

47c

55 , 676 . 48c 541 071 . 49

50

51c 52

64 r 051- 53 67 , 765 . 1,165,920 . 54 1,263,867 .

47 a Accounts receivable . . . . . . . . . b Less : allowance for doubtful accounts

48 a Pledges receivable . . - _ 48a b Less: allowance for doubtful accounts**** .* . .* . 48b

49 Grants receivable . . _ _ . . 50 Receaables from officers, directors, trustees,

and key employees . . 51 a Other notes and loans receivable 51a

b Less : allowance for doubtful accounts . . . [5lb 52 Inventories for sale or use . . . . . . . 53 Prepaid expenses and deferred charges 54 Investments-securities STMT 10 . 55 a Investments - land, buildings, and

equipment, basis 55a

1 D Cost D FMV

3 08461015 733030 2244 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1

Note : Where required, attached schedules and amounts within the description column should be for end-of-year amounts only.

45 Cash-non-interest-bearing 48 Savings and temporary cash investments

541,071 .

b Less' accumulated depreciation 55h 55c

58 Investments - other . . . . . . 56

57 a Land, buildings, and equipment . basis 57a '7 07 , 270 .

b less : accumulated depreciation 57b 253 , 921 . 476 , 702 . 57c 453 , 349 . 58 Other assets (describe " ) 58

59 Total assets add lines 45 throu g h 58 must equal line 74 1 955 , 8 2 5 . 59 3 17 3 , 16 9 .

80 Accounts payable and accrued expenses . . 132 , 719 . 60 150 , 675 .

81 Grants payable . . . . 61

82 Deferred revenue . . . . . . 62

83 Loans from officers, directors, trustees, and key employees . . . . . . . 63 64 a Tax-exempt bond liabilities 64a

b Mortgages and other notes payable . . . . . . 64b 65 Other liabilities (describe 110- SECURITY DEPOSIT PAYABLE ) 63 , 790 . 65 18 , 140 .

68 Total liabilities add lines 60 through ss 196 , 509 . ss 168 , 815 . Organizations that follow SFAS 117, check here 1 EXI and complete lines 67 through

69 and lines 73 and 74 67 Unrestricted . . . 1 6 6 0 899 . 67 2 , 568 , 804 . 68 Temporarily restricted 98 , 417 . 58 1 435 , 550 .

al 69 Permanency restricted . . . . . . 69 Organizations that do not follow SFAS 117, check here 1 ED and complete lines

70 through 74 ,°p 70 Capital stock, trust principal, or current funds _ . . . . . . . . . . . . . . . . . . 70

r Paid-in or capital surplus, or land, building, and equipment fund . . . . . . . . . . . . 71 72 Retained earnings, endowment, accumulated income, or other funds . . . . . . . . . . . . . 72 73 Total net assets or fund balances (add tines 67 through 69 or lines 70 through 72 ;

1 , 759 , 316 . 73 3 , 004 , 354 . column (A) must equal line 19 ; column (B) must equal line 21) _ . 1 74 Total liabilities and net assets l end balances (add lines 66 and 73) . _ 1 , 955 , 825 . 74 3 , 173 , 169 .

Form 990 is available for public inspection and, for some people, serves as the primary or sole source of information about a particular organization How the public perceives an organization m such cases may be determined by the information presented on its return. Therefore, please make sure the return is complete and accurate and fully describes, in Part Ill, the organization's programs and accomplishments.

323021 12

. 17-M

SOCIETY 13-2992567 Page 4 it'd 11f-~ Reconciliation of Expenses per Audited

Financial Statements with Expenses per

S Add amounts on lines (1) and (2) Po.

e Total expenses per line 17, Form 990 (line c plus line d) 11110.

mployees (List each one even d not compensated ) (B) Title and average hours C) Compensation (Dc o~

per week devoted to lit not pjlQ, enter

0 .

2,157,237 .

,9 co (E) Expense account and (A) Name and address

---------------------------------

SEE STATEMENT 12

--------------------------------- ---------------------------------

i ---------------------------------

---------------------------------I

--------------------------------- ---------------------------------

--------------------------------- ---------------------------------

--------------------------------- ---------------------------------

--------------------------------- ---------------------------------

--------------------------------- ---------------------------------I

--------------------------------- ---------------------------------

144 , 467 .I 26, 670 .I 0 .


orm 990 12003 ) NATIONAL DOWN SYNDROM M Reconciliation of Revenue per Audited

Financial Statements with Revenue per Return

a Total revenue, gains, and other support per audited financial statements " a 3 , 402 , 275 .

b Amounts Included on line a but not on line 12, Form 990:

(1) Net unrealized gains on investments $ 12 0 , 211 .

(2) Donated services and use of facilities $ 175f955 .

(3) Recoveries of prior year grants . . . . . . . . S

(4) Other (specify) : S

Add amounts on lines (1) through (4) . " b 296 f 166 . c line a minus line b . . . . . " c 3 106 109 . d Amounts included on line 12, form

990 but not on line a :

(1) Investment expenses not included on line fib, Form 990 . t

(2) Other (specify) : STMT 11 s 175,955 .

Add amounts on lines (1) and (2) 111- d 175f955 .

e Total revenue per line 12, Form 990 (line c plus line d . " e 3 , 282 , 064 .

Pmt 1l List of Officers . Directors. Trustees. and Key I

a Total expenses and losses per audited financial statements . . . . . . . . . . . . .

b Amounts included on line a but not on line 17, Form 990 :

(1) Donated services and use of facilities $

(2) Prior year adjustments reported on line 20, Form 990 . . . . $

(3) Losses reported on line 20, Form 990 $

(4) Other (specify) : S

Add amounts on lines (1) through (4) c Line a minus line b d Amounts included on line 17, Form

990 but not on line a .

(1) Investment expenses not included on line fib, Form 990 $

(2) Other (specify) :

2 .157 .237 .

0 . 7 .

75 Did any officer, director, trustee, or key employee receive aggregate compensation of more than $100,000 from your organization and all related organizations, of which more than $10,000 was provided by the related organizations? If Yes; attach schedule . " ElYes EKNo

_,7_03 Form 990 (2003)

'S 08461015 733030 2244 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1

Form 990 (5003) NATIONAL DOWN SYNDROME SOCIETY 13-2992567 Page 5 Yes No .8 j .1 Other Information

78 Did the organization engage in any activity not previously reported to the IRS? If Yes; attach a detailed description of each activity . . . . . . . . 78 X

77 Were any changes made in the organizing or governing documents but not reported to the IRS? 77 X

n Yes; attach a conformed copy of the changes . 78 a Did the organization have unrelated business gross income of $1,000 or more during the year covered by this return? 78a X

b If *Yes,' has it filed a tax return on Form 990-T for this year? , , . . . . . . . ., . . N/A , 78b

79 Was there a liquidation, dissolution, termination, or substantial contraction during the year? . . . . . . . 79 X

If 'Yes,* attach a statement 80 a Is the organization related (other than by association with a statewide or nationwide organization) through common membership,

governing bodies, trustees, officers, etc ., to any other exempt or nonexempt organization? , . . . . . . . , . . . . . 80a X . . . . . . . . b If 'Yes; enter the name of the organization 01

and check whether d is ~ exempt or 0 nonexempt . 81 a Enter direct or indirect political expenditures . See line 81 instructions _ . . . . . . . . . . 81a 0 .

b Did the organization file Form 1120-POL for this year? _ _ . _ . . . 81b X 82 a Did the organization receive donated services or the use of materials, equipment, or facilities at no charge or at substantially less than

fair rental value? 82a X b If 'Yes : you may indicate the value of these items here . Do not include this amount as revenue m Part I or as an

expense in Part II . (See instructions m Part III .) . . . 82b 175 , 955 .

83 a Did the organization comply with the public inspection requirements for returns and exemption applications _ 83a X

b Did the organization comply with the disclosure requirements relating to quid pro quo contributions? . . 83b X

84 a Did the organization solicit any contributions or gifts that were not tax deductibles _ 84a X

b If 'Yes,* did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible? . . N/A 84b

85 501(c)(4), (5), or (6) organizations . a Were substantially all dues nondeductible by members N/A 85a b Did the organization make only in-house lobbying expenditures of $2,000 or less . . . . N/A . 85b

If 'Yes' was answered to either 85a or 85b, do not complete 85c through 85h below unless the organization received a waiver for proxy tax owed for the prior year.

e Dues, assessments, and similar amounts from members . . . . . . 85c N/A

d Section 162(e) lobbying and political expenditures . . . . 85d N/A

e Aggregate nondeductible amount of section 6033(e)(1)(A) dues notices 85e N/A

f Taxable amount of lobbying and political expenditures (line 85d less 85e) 85f N/A

q Does the organization elect to pay the section 6033(e) tax on the amount on line 85f? . . . N/A . . 85 h If section 6033(e)(1)(A) dues notices were sent, does the organization agree to add the amount on line 85f to its reasonable estimate of dues

allocable to nondeductible lobbying and political expenditures for the following tax year? N/A . . 85h 88 501(c)(7) organizations. Enter: a Initiation fees and capital contributions included on line 12 86a N/A

b Gross receipts, included on line 12, for public use of club facilities . . . . . . 86b N/A

87 501(c)(12) organizations. Enter : a Gross income from members or shareholders 87a N/A

b Gross income from other sources (Do not net amounts due or paid to other sources against amounts due or received from them .) _ __ _ . 87b N/A

88 At any time during the year, did the organization own a 500 or greater interest m a taxable corporation or partnership, or an entity disregarded as separate from the organization under Regulations sections 301 .7701-2 and 3017701-3? If 'Yes; complete Part IX 88 X

89 a 501(c)(3) organizations. Enter : Amount of tax imposed on the organization during the year under: section 4911 . 0 . ; section 4912 . 0 . ; section 4955 . 0 .

b 501(c)(3) and 501(c)(4) organizations. Did the organization engage in any section 4958 excess benefit transaction during the year or did d become aware of an excess benefit transaction from a prior year? If Yes,' attach a statement explaining each transaction . ., . . . . . . . . . . . . . . . . . . . . 8913 X

e Enter. Amount of tax imposed on the organization managers or disqualified persons during the year under sections 4912, 4955, and 4958 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . " 0 .

d Enter. Amount of tax on line 89c, above, reimbursed by the organization __ _ . . . . " 0 . 90 a Ust the states with which a copy of this return is filed 1 NEW YORK

6 Number of employees employed m the pay period that includes March 12, 2003 . . . . . . . . . . . . . . . . . . . . . . ., ., ~ 90b ~ 16 91 The books are in care of " BRIAN KLAUSNER Telephone no 10- 212-763-4362

located at " 666 BROADWAY, NY, NY ZIP+4 No- 10012

92 Section 49470!(1) nonexempt charitable trusts filing Form 990 in lieu of Form 1041- Check here . " 0 and enter the amount of tax-exempt interest received or accrued during the tax year . . . . . . . . . . . . " I 92 I N/A

Form 990 (2003)

13-2992567 Pages Form 990 (2003) NATIONAL DOWN SYNDROME SOCIETY V1! Analysis of Income-Producing Activities see page 33 of the instructions) P' rt

Note : Enter gross amounts unless otherwise Unrelated business income Excluded n section sit, sia, orsia

Indicated. (A) (B) ~~_ (0) Related or exempt Business Amount �o � Amount 93 Program service revenue: code cod, function income

a BKLET, FILM, EDUC 29 , 236 . b CONFERENCE FEES 195 030 . e d e f Medicare/Medicaid payments , . . . ., . . . . p Fees and contracts from government agencies . . . .

94 Membership dues and assessments . . . . . . . . . . . . . . . . . 95 Interest on savings and temporary cash investments . . . 96 Dividends and interest tom securities . . . . . . 14 50 , 357 . 97 Net rental income or (loss) tram real estate :

a debt-financed property . . . . . b not debt-financed property 16 35 f 783 .

98 Net rental income or (loss) from personal property 99 Other investment income . . .

100 Gam or (loss) from sales of assets other than inventory 18 <8 , 957 . >

101 Net Income or (loss) from special events 01 _1 1` 046 , 753 . 102 Gross profit or (loss) from sales of inventory . . . 103 Other revenue:

a OTHER O1 100 . b s d e

1 04 Subtotal (add columns (e), (D), and (E)) . ~ 0 . 1,124,036 . 1 224,266 . 105 Total (add line 104, columns (B), (D), and (E)) . . " 1,348,302 . Note : Line 105 plus line 1d, Part l, should equal the amount on line 12, Part l. partV~q Relationship of Activities to the Accomplishment of Exempt Purposes (see page 34 of the instructions) Line No . Explain how each activity for which income is reported in column (E) of Part VII contributed importantly to the accomplishment of the organization's

exempt purposes (other than by providing lands for such purposes) . 93A DISSEMINATING OF INFORMATION ABOUT DOWN SYNDROME

E PUBLICATIONS OF INFORMATION REGARDING DOWN SYNDROM

Name, address, arid~EIN of corporation, I Percentage of ~ Nature of activities ~ Total income

N

Part X . I Information Regarding Transfers Associated (a) Did the organization, during the year, receive any funds, directly or indirectly, (b) Did the organization, during the year, pay premiums, directly or indirectly, on Note : if 'Yes' to (D), file Form 8870 and Form 4720 (see instructions) .

Please m;u' Sign Here ' Si 4 1

Paid PreDarers signature

Preparers Firm's �� ,e Use On yours If ly

salt-amp] o~y~ 323161 ~d~ %` 12 .17-03 2312+4

/LO E 4 TROPER '65~THIRD AVENUE NEW YORK, NY 10017

08461015 733030 2244 2003 .05000

(See page 34 of the instructions )

SCHEDULE A (Form 990 or 980-EZ)

Department of the Treasury Internal Revenue Service

Organization Exempt Under Section 501(c)(3) (Except Private Foundation) and Section 501(e), 5010, 501(k),

501 (n), or Section 49a7(a)(1 ) Nonexempt Charitable Trust Supplementary Information-(See separate instructions .)

lo. MUST be completed by the above organizations and attached to their Form 990 or 990-E2 2003

Name of the organization

NATIONAL DOWN SYNDROME SOCIETY Employer Identification number 13 2992567

Compensation of the Five Highest Paid Employees Other Than Officers, Directors, and Trustees (See page 1 of the instructions . List each one . If there are none, enter'None .')

(a) Name and address of each employee paid (b) Idle and average hours (aG~1lploy eubmeflto (e) Expense

than $50,000 per week devoted to (c) Compensation p,a� a a,f�,~ account and other

more oosdion compensation allowances

76 , 153 . 3 , 992 . 2 , 034 .

57,490 . 0 . 981 .

Total number of others receiving over $50,000 for professional services . . . . . . . . . 1 I 0

a2aioin2-osao LHA For Paperwork Reduction Act Notice, see the Instructions for Form 990 and Form 990-EZ . Schedule A (Form 990 or 990-EZ) 2003 7


OMB No 13450047

HELAINE BARUCH . IR OF DEV

C/O NDSS 666 BROADWAY NY, NY 10012 40

BARBARA PITTS IR AFFL SVC

C/O NDSS 666 BROADWAY NY NY 10012 40

ANDREA LACK ASSOC DIR

C/0 NDSS 666 BROADWAY NY, NY 10012 40

BRIAN KLAUSNER INANCE DIR

C/O NDSS 666 BROADWAY NY, NY 10012 T40

105,144 .1 5,489 .1 2,321 .

69,021 .1 2,974 .1 1,684 .

Total number of other employees paid over $50,000 . .. . . . . . . . . . " 0

4Compensation of the Five Highest Paid Independent Contractors for Professional Services (See page 2 of the instructions . List each one (whether individuals or firms). If there are none, enter'None .')

(a) Name and address of each independent contractor paid more than $50,000 (b) Type of service (c) Compensation

NONE

---------------------------------------------

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

13 0 An organization that is not controlled by any disqualified persons (other than foundation managers) and supports organizations described in, (1) lines 5 through 12 above ; or (2) section 501(c)(4), (5), or (6), rf they meet the test of section 509(a)(2). (See section 509(a)(3) )

Provide the following information about the supported organizations . (See page 5 of the instructions )

(a) Name(s) of supported organization(s) (b) Line number

from above

14 Q M organization organized and operated to test for public safety. Section 509(a)(4). (See page 6 of the instructions ) Schedule A (Form 990 or 990-EZ) 2003

323111 12-OS03

8


Schedule X(Form 990 or 990-EZ) 2003 NATIONAL DOWN SYNDROME SOCIETY 13-2992567 Page 2

R~d1"~ I1# Statements About Activities (See page 2 of the instructions) Yes No

1 During the year, has the organization attempted to influence national, state, or local legislation, including any attempt to influence

public opinion on a legislative matter or referendum? If 'Yes,* enter the total expenses paid or incurred in connection with the lobbying activities 1 $ a 7 , 4 0 5 . (Must equal amounts on line 38, Part VI-A,

or pine i of Part VI-B .) VI-A, LINE 38B 1 X

Organizations that made an election under section 501(h) by filing Form 5768 must complete Part VI-A. Other organizations checking 'Yes,' must complete Part VI-8 AND attach a statement giving a detailed description of the lobbying activities .

2 During the year, has the organization, either directly or indirectly, engaged m any of the following acts with any substantial contributors, trustees, directors, officers, creators, key employees, or members of their families, or with any taxable organization with which any such person is affiliated as an officer, director, trustee, majority owner, or principal beneficiary? (1/ the answer to any question is "Yes." attach a detailed statement explerning the transactions.) SEE STATEMENT 13

a Sale, exchange, or leasing of property? . . . . . . . . . . . . . . . . . . 2a X

b Lending of money or other extension of credit? . . . . . . . . . . . . 2b X

c Furnishing of goods, services, or facilities? _ . . . . . . __ 2c

d Payment of compensation (or payment or reimbursement of expenses rf more than $1,000) 1 2d I I X

e Transfer of any part of its income or assets? . . . . . . . . . . . . 2e X

3 a Do you make grants for scholarships, fellowships, student loans, etc . (if 'Yes,* attach an explanation of how 3a X you determine that recipients quality to receive payments ) b Do you have a section 403(b) annuity plan for your employees . . . . . . . . 3b K

4 Did you maintain any separate account for participating donors where donors have the right to provide advice on the use or distribution of funds? 4 X

Reason for Non-Private Foundation Status (See pages 3 through 6 of the instructions )

The organization is not a private foundation because d is : (Please check only ONE applicable box.) 5 [::] A church, convention of churches, or association of churches . Section 170(b)(1)(A)(i) 6 ~ A school . Section 170(b)(1)(A)(u) (Also complete Part V ) 7 ~ A hospital or a cooperative hospital service organization . Section 170(b)(1)(A)(ui) . 8 ~ A Federal, state, or local government or governmental unit . Section 170(b)(1)(A)(v) . 9 ~ A medical research organization operated in conjunction with a hospital Section 170(b)(1)(A)(m) Enter the hospitals name, city,

and state 10, 10 ~ An organization operated for the benefit of a college or university owned or operated by a governmental unit. Section 170(b)(1)(A)(iv) .

(Also complete the Support Schedule in Part IV-A ) 11a D An organization that normally receives a substantial part of its support from a governmental and or from the general public .

Section 170(b)(1)(A)(vi) (Also complete the Support Schedule in Part IV-A .) 11b ~ A community trust . Section 170(b)(1)(A)(w) . (Also complete the Support Schedule in Part IV-A 12 ~ An organization that normalcy receives . (1) more than 331/3% of its support from contributions, membership fees, and gross

receipts from activities related to its charitable, etc ., functions - subject to certain exceptions, and (2) no more than 331/x% of its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses acquired by the organization after June 30,1975 . See section 509(a)(2). (Also complete the Support Schedule in Part IV-A )

g Public support percentage (line 27e (numerator) divided by line 27f (denominator) . . , . � . . . . . ~ 27 N/A 96 h Investment income percentage Pine 18 column e (numerato r) divided b line 27f denominato . . 1 27h N/A

28 Unusual Grants: For an organization described in line 10, 11, or 12 that reserved any unusual grants during 1999 through 2002, prepare a list for your records to show, for each year, the name of the contributor, the date and amount of the grant, and a brief description of the nature of the grant . Do riot file this list with bout return . Do not include these grants m line 15 .

323121 12-05-03 NONE Schedule A (Forth 990 or 990.E4 200


Schedule A (Form 990 or 990-EZ) 2003 NATIONAL DOWN SYNDROME SOCIETY 13-2992567 Page 3 .jj:Aj Support Schedule (Complete only if you checked a box on line 10, 11, or 12 .) Use cash method of accounting.

Note: You ma use the worksheet m the instructions /or converting from the accrual to the cash method of accounting. Calendar dear (or fiscal year beg in nin in . . . . . . . . 1 (a) 2002 (b) 2001 (c) 2000 (d) 1999 (e) Total

15 Gaits, grants, and contributions

reams see~ine28cludeunusua~

1 , 379 r 643 . 1 , 369 , 216 . 1 f 411 , 932 . 1 265 293 . 5 426 084 .

18 Membership fees received 17 Grass receipts from admissions,

merchandise sold or services performed, or furnishing of facilities In any activity that is related to the organization's charitable, etc., purpose 793 , 985 . 601 , 613 . 178 , 326 . 38 , 618 . 1 , 612 , 542 .

18 Gross income from interest, dividends, amounts received from payments on securities loans (section 512(a)(5)), rents, royalties, and unrelated business taxable income (less section 511 taxes) from businesses acquired by the organization after June 30,t975 64 106 . 39 , 552 . 188 655 . 133 842 . 426, 155 .

19 Net income from unrelated business activities not included in line 18

pp Tax revenues levied for the organization's benefit and ether paid to it or expended on its behalf

21 The value of services or facilities famished to the organization by a governmental amt without charge Do not include the value of services or facilities generally furnished to the public without charge

22 Other income . Attach a schedule Do not include gam or (loss) from sale of capital assets

23 total of lines 15 through 22 2 , 237 , 734 . 2 , 010 , 381 . 1 , 778 , 913 . 1 , 437 , 753 . 7 , 464 , 781 . 24 Line 23minus line 17 1 443 749 . 1 408 768 . 1 600 587 . 1 399 135 . 5 , 852 , 239 . 25 Enter 1 % otline 23 22 377 . 20 104 . 17 789 . 14 378 . 28 Organizations described on lines 10 or 11 : a Enter 2% of amount in column (e), line 24 1 26a 117 , 045 .

b Prepare a list for your records to show the name of and amount contributed by each person (other than a governmental and or publicly supported organization) whose total gifts for 1999 through 2002 exceeded the amount shown m line 26a . 0o not file this list with your return . Enter the total of all these excess amounts 1 26b 0 .

e Total support for section 509(a)(1) test : Enter line 24, column (e) 1 26c -5 , 8-5-2- , 5 2 239 . d Add : Amounts from column (e) for lines 18 426,155 . 19

22 26b 101- 26a 426 , 155 . e Public support (line 26c minus line 26d total) 1 26e 5 4 26 , 084 . 1 Public support Dercentaqe (line 26e (numerator) divided by line 26c (denominator) 1 26f 92 .7181%

27 Organizations described on line 12 : a For amounts included m lines 15, 16, and 17 that were received from a 'disqualified person ; prepare a list for your records to show the name of, and total amounts received m each year from, each 'disqualified person .' Do not file this list with your return . Enter the sum of such amounts for each year: N/A

(2000) (1999) (2002) . . (2001) b For any amount included m line 17 that was reserved from each person (other than 'disqualified persons'), prepare a list for your records to show the name of,

and amount reserved for each year, that was more than the larger of (1) the amount on line 25 for the year or (2) $5,000 . (Include m the list organizations described m lines 5 through 11, as well as individuals .) Do not file this list with your return . After computing the difference between the amount reserved and the larger amount described in (1) or (2), enter the sum of these differences (the excess amounts) for each year. N/A (2002) . . . . . . . . (2001) . . . . . . . ., . , . � , . (2000) (1999)

c Add : Amounts horn column (e) for lines : 15 16 17 20 21 . 27c N/A

d Add : line 27a total and line 27b total . . . . . . , . . 1 27d N/A

e Public support (line 27c total minus line 27d total) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 27e N / A f Total support for section 509(a)(2) test. Enter amount online 23, column (e) . . . 1 271 N/A

34 a Does the organization receive any financial aid or assistance from a governmental agency? b Has the organization's right to such aid aver been revoked or suspended?

It you answered 'Yes' to either 34a or b, please explain using an attached statement. 35 Does the organization certify that it has complied with the applicable requirements of sections 4 01 through 4 .05 of Rev Proc 75-50,

1975-2 C B 587, covenng racial nondiscrimination? If No .' attach an explanation

323131 12-OS03

10


Schedule A (Form 990 or 990-EZ) 2003 NATIONAL DOWN SYNDROME SOCIETY 13-2992567 Page y Private School Questionnaire (Seepage 7 of the instructions.) N/A

o be completed ONLY by schools that checked the box on line 6 in Part 11n

29 Does the organization have a racially nondiscriminatory Yes NO policy toward students by statement in its charter, bylaws, other governing

Instrument, or in a resolution of its governing body? , . . . . . . 29 30 Does the organization include a statement of its racially nondiscriminatory policy toward students m all its brochures, catalogues,

and other written communications with the public dealing with student admissions, programs, and scholarships . . 30 81 Has the organization publicized its racially nondiscriminatory policy through newspaper or broadcast media during the period of

solicitation for students, or during the registration period rf it has no solicitation program, in a way that makes the policy known to all pans of the general community it serves? ._ . . . . . . . . . . . -- . . . . . . . . . . . . . . . 31 If Yes; please describe ; if 'No ; please explain . (If you need more space, attach a separate statement .)

32 Does the organization maintain the following : a Records indicating the racial composition of the student body, faculty, and administrative staff? b Records documenting that scholarships and other financial assistance are awarded on a racially nondiscriminatory basis? e Copies of all catalogues, brochures, announcements, and other written communications to the public dealing with student

admissions, programs, and scholarships? d Copies of all material used by the organization or on its behalf to solicit contributions?

If you answered 'No'to any of the above, please explain . (If you need more space, attach a separate statement )

33 Does the organization discriminate by race m any way with respect to : a Students' fights or privileges? . . . . . . . . . b Admissions policies? . . . � , . c Employment of faculty or administrative staffs d Scholarships or other financial assistance e Educational policies _ . . . . .

. . . . . . . . . I Use of facilities? g Athletic programs? . . h Other extracurricular activities?

If you answered Yes'to any of the above, please explain (If you need more space, attach a separate statement )

Schedule A (Farm 990 or 990-EZ) 2003

Schedule A (Form 990 or 990-EZ) 2003 NATIONAL DOWN SYNDROME SOCIETY 13-2992567 Page 5

Lt~ Lobbying Expenditures by Electing Public Charities (see page 9 of the instructions .) (To be completed ONLY by an eligible organization that filed Form 5768)

Check 10, a Ej if the omanization belongs to an affiliated group. Check 01 b E] ff you ch cked "a' and 'limited control' provisions apply . (a) (b)

Limits on Lobbying Expenditures Affiliated group To be completed for ALL (The term 'expenditures' means amounts paid or incurred .) totals electing organizations

N/A

36 Total lobbying expenditures to influence public opinion (grassroots lobbying) . . . . . . . . . . . . 36 0 . 37 Total lobbying expenditures to influence a legislative body (direct lobbying) . . . . . . . . . . 37 7-,405 . 38 Total lobbying expenditures (add lines 36 and 37) . . . . . . . . . . . . . . . . . . . . 38 7,405 .

39 Other exempt purpose expenditures . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 2,149,832 .

40 Total exempt purpose expenditures (add lines 38 and 39) . . . . . . . 40 2,157,237 .

41 Lobbying nontaxable amount Enter the amount from the following table - If the amount an line 40 Is - The lobbying nontaxable amount Is - Not over $500,000 . . . 20% of the arnount on line 40 . . . Over $500,ODO but not over $1,000,ooo $100,000 plus 15% of the excess over $500,000 Over $1 .000,000 but not over $1,500,01o) $175,000 plus 10% of the excess over $1,000,000 . . . 41 257(862 . Over $1,500,000 but not over $17,000,000 $225,000 plus 5% of the excess over $1,500,000 Over$17,000.001) . . . $1,ODO.000 . . . .

42 Grassroots nontaxable amount (enter 25% of line 41) 42 64 r466 43 Subtract line 42 from line 36 . Enter -0- if line 42 is more than line 36 43 0 .

44 Subtract line 41 from line 38 . Enter -0- it line 41 is more than line 38 44 0 .

Caution: If there is an amount on either line 43 or line 44, you must file Form 4720.

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 instructions for lines 45 through 50 on page 11 of the instructions )

Lobbying Expenditures During 4-Year Averaging Period

Calendar year (or (a) (b) W (d) (a) fiscal year beginning In) 1111. 2003 2002 2001 2000 Total

45 Lobbying nontaxable amount 257,862 . 257FO86 . 221133j008844 ._202r999 . -93-1-1031 .

46 Lobbying ceiling amount (150% of line 45(e)) 1,396,547 .

47 Total lobbying expenditures 7,405 . 14,906 . 13,446 . 12,960 . 48,717 .

48 Grassroots nontaxable amount 64,466 . 64,272 . 53,271 . 50,750 . 232,759 .

49 Grassroots ceiling amount 0 50% of line 48(e)) 349 . 39 .

50 Grassroots lobbying expenditures . 0 .

[PqtfV1?-B Lobbying Activity by Nonelecting Public Charities (For reporting only by organizations that did not complete Part VI-A) (See page 12 of the instructions .) N/A

During the year, did the organization attempt to influence national, state or local legislation, including any attempt to Yes No Amount

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 c through h.) . . . . . . . . . . . c Media advertisements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . d Mailings to members, legislators, or the public . . . . . . a Publications, or published or broadcast statements . . . . . . . . . . . . . . . - I 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 other means . . . . . . . . . . . . . . . . . I Total lobbying expenditures (Add lines c through h .) . . . . . . 0 .

If 'Yes' to any of the above, also attach a statement grving a detailed description of the lobbying activities . 323141 12-05-03 Schedule A (Form 990 or 990-EZ) 2003


(a) (b) (0 (d) Line no Amount involved Name of nonchantable exempt organization Description of transfers, transactions, and sharing arrangements

52 a Is the organization directly or indirectly affiliated with, or related to, one or more tax-exempt organizations described in section 501(c) of the Code (other than section 501 (c)(3)) or in section 527? No- E] Yes EXI No

12 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1 08461015 733030 2244

Schedule A (Form 990 or990-EZ) 2003 NATIONAL DOWN SYNDROME SOCIETY 13-2992567 Page 6

y.W-Vit 1 information Regarding Transfers To and Transactions and Relationships With Noncha table rN - ' ri Exempt Organizations (See page 12 of the instructions .)

51 Did the reporting organization directly or indirectly engage in any of the following with any other organization described in section

501 (c) of the Code (other than section 501 (c)(3) organizations) or in section 527, relating to political organizations?

a Transfers from the reporting organization to a nonchantable exempt organization of . (1) Cash . . . . . . . . . . . . . . . 51 a (1) X

(11) Other assets . . . . . . . . . a(li) X

b Other transactions : (1) Sales or exchanges of assets with a noncharftable exempt organization . . . . . . . . . . . . . b(l) X

(11) Purchases of assets from a nonchantable exempt organization . . . . . . . . . . . . . . . . . . b(II) . . X

(111) Rental of facilities, equipment, or other assets . . . . . . . . . . b(Ill) X

(1w) Reimbursement arrangements . . . . . . . . . . . . . . . . b(IV) X

(v) Loans or loan guarantees . . . . . . . . . . . . . . b(V) X

(vi) Performance of services or membership or fundraising solicitations . . . . . . b(vi) X

Sharing of facilities, equipment, mailing lists, other assets, or paid employees C X

If the answer to any of the above is "fes,' complete the following schedule Column (b) should always show the fair market value of the

goods, other assets, or services given by the reporting organization It the organization received less than fair market value in any transaction or sharing arrangement, show in column (d) the value of the goods, other assets, or services received, N/A

FORM 990 RENTAL EXPENSES STATEMENT 2

ACTIVITY DESCRIPTION NUMBER AMOUNT TOTAL

MANAGEMENT AND GENERAL 9,417 .

TOTAL TO FORM 990, PART I, LINE 6B 9,417 .

16 STATEMENT(S) 1, 2, 3, 4 08461015 733030 2244 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1

NATIONAL DOWN SYNDROME SOCIETY 13-2992567

FORM 990 RENTAL INCOME STATEMENT 1

ACTIVITY GROSS KIND AND LOCATION OF PROPERTY NUMBER RENTAL INCOME

666 BROADWAY, OFFICE CONDO 45,200 .

TOTAL TO FORM 990, PART I, LINE 6A 45,200 .

- SUBTOTAL - I 9,417 .

FORM 990 GAIN (LOSS) FROM PUBLICLY TRADED SECURITIES STATEMENT 3

GROSS COST OR EXPENSE NET GAIN DESCRIPTION SALES PRICE OTHER BASIS OF SALE OR (LOSS)

570,632 . 579,589 . 0 . <8,957 .>

TO FORM 990, PART I, LINE 8 570,632 . 579,589 . 0 . <8,957 .>

FORM 990 SPECIAL EVENTS AND ACTIVITIES STATEMENT 4

GROSS CONTRIBUT . GROSS DIRECT NET DESCRIPTION OF EVENT RECEIPTS INCLUDED REVENUE EXPENSES INCOME

GALA AND AUCTION 600,358 . 30,915 . 569,443 . 99,824 . 469,619 . GOLF 270,165 . 91,340 . 178,825 . 55,946 . 122,879 . WOMENS LUNCH 128,340 . 15,370 . 112,970 . 52,140 . 60,830 . OTHER 582,587 . 582,587 . 189,162 . 393,425 .

TO FM 990, PART I, LINE 9 1,581,450 . 137,625 . 1,443,825 . 397,072 . 1,046,753 .

NAiIONAL DOWN SYNDROME SOCIETY 13-2992567

FORM 990 OTHER CHANGES IN NET ASSETS OR FUND BALANCES STATEMENT 5

120,211 . TOTAL TO FORM 990, PART I, LINE 20

FORM 990 OTHER EXPENSES STATEMENT 6

46,887 . 38,686 . 1,816 . 6,385 . 32,392 . 32,335 . 57 .

325,060 . 236,886 . 7,297 . 80,877 . TOTAL TO FM 990, LN 43

TO PROVIDE INFORMATION AND REFERRAL SERVICES AND ENHANCE PUBLIC AWARENESS OF DOWN SYNDROME

17 STATEMENT(S) 5, 6, 7 2003-05000 NATIONAL DOWN SYNDROME SOCI 2244 1 08461015 733030 2244

DESCRIPTION

UNREALIZED LOSS ON INVESTMENTS

AMOUNT

120,211 .

DESCRIPTION

CONSULTANTS BOOKS, FILMS, ETC . MISCELLANEOUS PROFESSIONAL FEES BANK CHARGES REPAIRS AND SERVICE DIRECT MAIL TECHNOLOGY UPGRADE AND INTERNET SERVICES PUBLIC RELATIONS

(A) (B) (C) (D) PROGRAM MANAGEMENT

TOTAL SERVICES AND GENERAL FUNDRAISING

96,099 . 93,616 . 846 . 1,637 . 37,952 . 21,004 . 25 . 16,923 . 13,419 . 9,716 . 1,145 . 2,558 . 14,379 . 8,789 . 810 . 4,780 . 37,881 . 16,308 . 728 . 20,845 . 17,265 . 12,757 . 1,927 . 2,581 . 28,786 . 3,675 . 25,111 .

FORM 990 STATEMENT OF ORGANIZATION'S PRIMARY EXEMPT PURPOSE STATEMENT 7 PART III

EXPLANATION

NATiONAL DOWN SYNDROME SOCIETY 13-2992567

FORM 990 CASH GRANTS AND ALLOCATIONS STATEMENT 8

DONEE'S CLASSIFICATION DONEE'S NAME DONEE'S ADDRESS RELATIONSHIP

RESEARCH BOARD OF REGENTS 750 UNIVERSITY NONE AVENUE, MADISON, WI 53706

RESEARCH CHILDRENS HOSPITAL 34 CIVIC CENTER NONE OF PHILADELPHIA BLVD

ROOM 108 JOHNSON NONE HALL, FORT COLLINS, CO 80523

1999 DEMPSTER NONE STREET, PARK RIDGE, IL 60068

540 CANFIELD, NONE DETROIT, . MI 48201

1899 GAYLORD NONE STREET, DENVER, CO 80206

RESEARCH WAYNE STATE UNIVERSITY

RESEARCH ELEANOR ROOSEVELT INNSITITUTE

77,662 . TOTAL INCLUDED ON FORM 990, PART II, LINE 22

STATEMENT 9 FORM 990 OTHER PROGRAM SERVICES

GRANTS AND ALLOCATIONS EXPENSES

147,052 . 407,942 . 131,197 . 186,541 . 169,272 .

1,042,004 .

DESCRIPTION

ADVOCACY - SEE STATEMENT EDUCATION AND INCLUSIONS - SEE STATEMENT WEBSITE - SEE STATEMENT AFFILIATES - SEE STATEMENT RESEARCH - §EE STATEMENT -

TOTAL TO FORM 990, PART III, LINE E

18 STATEMENT(S) 8, 9 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1 08461015 733030 2244

RESEARCH COLORADO STATE UNIVERSITY

RESEARCH ADULT DOWN SYNDROME CENTER

AMOUNT

11,500 .

10,562 .

12,700 .

10,000 .

15,000 .

17,900 .

DESCRIPTION AMOUNT

IN KIND DIRECT COST OF SPECIAL EVENT 175,955 .

TOTAL TO FORM 990, PART IV-A 175,955 .



FORM 990 NON-GOVERNMENT SECURITIES STATEMENT 10

OTHER PUBLICLY TOTAL

CORPORATE CORPORATE TRADED OTHER NON-GOV'T SECURITY DESCRIPTION STOCKS BONDS SECURITIES SECURITIES SECURITIES

MUTUAL FUNDS 117,754 . 117,754 . SECURITIES 1,146,113 . 1,146,113 .

TO 990, IN 54 COL B 1,263,867 . 1,263,867 .

FORM 990 OTHER REVENUE INCLUDED ON FORM 990 STATEMENT 11

CHARLOTTE SIMMONS HONORARY TRUSTEE C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

20 STATEMENT(S) 12 2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1 08461015 733030 2244


FORM 990 PART V - LIST OF OFFICERS, DIRECTORS, STATEMENT 12 TRUSTEES AND KEY EMPLOYEES

EMPLOYEE TITLE AND COMPEN- BEN PLAN EXPENSE

NAME AND ADDRESS AVRG HRS/WK SATION CONTRIB ACCOUNT

MYRA MADNICK EXECUTIVE DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY 50 10012 144,467 . 26,670 . 0 .

ELIZABETH F GOODWIN CHAIR AND CO-FOUNDER C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

THOMAS J O'NEIL PRESIDENT C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

STEPHEN RIGGIO VICE PRESIDENT C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

J . MICHEAL SCHELL, ESQ . VICE PRESIDENT C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

MADELEINE WILL VICE PRESIDENT C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

THOMAS F . ROBARDS TREASURER C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

ANNE MARIE LOPEZ SECRETARY C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .


COLLEEN BELLITTI DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

MARIAN BURKE DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

JOYCE CLARK DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

TERRENCE P . CLANCY DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

WILLIAM I . COHEN, M .D . DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

SUSAN CORSE-ADAMS DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

ROY DANIS DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

MARY ELLEN JOHNSON DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

MITCHELL LEVITZ DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

DAVID PATTERSON, PH .D . DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012 0 . 0 . 0 .

08461015 733030 2244 21 STATEMENT(S) 12

2003 .05000 NATIONAL DOWN SYNDROME SOCI 2244 1

144,467 . 26,670 . 0 . TOTALS INCLUDED ON FORM 990, PART V

THE ORGANIZATION UTILIZED A PAID CONSULTANT WHOSE DUTIES INCLUDED ADVOCATING FOR INCREASED FUNDING ON MEDICAL RESEARCH AND TRACKING AND MONITORING LEGISLATION IMPORTANT TO THE ORGANIZATION .


NATIONAL DOWN SYNDROME SOCIETY

MIA PETERSON DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012

EGLON E . SIMONS DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012

HILDA B . TEMPLETON, M .D . DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012

PAMELA VAN DER LEE DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012

PATRICIA WHITE DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012

MARGARET L . WOLFF, ESQ . DIRECTOR C/O NDSS 666 BROADWAY NEW YORK, NY .25 10012

13-2992567

0 . 0 . 0 .

0 . 0 . 0 .

0 . 0 . 0 .

0 . 0 . 0 .

0 . 0 . 0 .

0 . 0 . 0 .

SCHEDULE A STATEMENT REGARDING ACTIVITIES WITH STATEMENT 13 SUBSTANTIAL CONTRIBUTORS, TRUSTEES, DIRECTORS,

CREATORS, KEY EMPLOYEES, ETC, . PART III, LINE 2

Education Throughout the year, NDSS produces and disseminates numerous educational materials to new and expectant parents, individuals with Down syndrome, siblings, relatives, friends, educators, health care professionals, mental health professionals, researchers and others . Print materials include more than 40 different brochures and resource lists in English and in Spanish topics including new parenthood, health care, life planning, inclusion, sexuality and speech and language . NDSS also produces and disseminates educational videos, posters and books. In total, over 250,000 educational materials are disseminated to more than 50,000 individuals and organizations worldwide each year. In addition, NDSS develops and disseminates educational programs, including Changing Lives: Down Syndrome & the Health Care Professional Program, which educates health care professionals about the specific needs of individuals with Down syndrome and provides important resources ; and the Teaching Partnership Inclusion Program, which promotes acceptance and inclusion in schools and communities. Also, each year, more than 30,000 people are served through the Information and Referral Center, which responds to requests via a toll-free help line, e-mail and mail .

National Down syndrome Society Form 990 13-2992567

Statement 14

Update Update, a quarterly newsletter featuring up-to-date information about topics specific to Down syndrome and about NDSS .

Upbeat Upbeat is a magazine written for and by teens and adults with Down syndrome .

National Conference The annual NDSS National Conference brings together hundreds of parents, individuals with Down syndrome, family members and professionals for important learning and networking opportunities . World-renowned experts in their fields address issues from infancy through adulthood in Down syndrome, including research, early intervention, education, health care, employment, housing, advocacy, socialization and more.

Public Awareness Throughout the year, NDSS reaches out to the public through television, radio, print media and the Internet to increase awareness and acceptance of individuals with Down syndrome . In October, Down Syndrome Awareness Month, that effort is increased as 200,000 individuals participate in more than 200 NDSS Buddy Walks across the country, and as thousands of press releases and television and radio public service announcements are disseminated nationwide .

Advocacy NDSS advocates year-round on behalf of individuals with Down syndrome and their families on a number of legislative issues, including health care, education, employment, housing and research . NDSS recently opened a National Policy Center in Silver Springs Maryland . The NDSS policy team provides grassroots and legislative advocacy training throughout the year for parents, individuals with Down syndrome and others, through conference workshops, an on-line Advocacy Center and e-mail advocacy alerts .

Statement 14 continued

Research NDSS is one of the largest private, non-government supporters of Down syndrome research in the world . Through the Charles J . Epstein Down Syndrome Research Award Program, approximately $75,000 is spent each year to directly support basic, applied and clinical research . NDSS spends thousands more on research-related activities in Washington, D.C. and elsewhere, in an effort to increase federal and private funding of Down syndrome research . In addition, NDSS sponsors international research conferences and scientific symposia on topics including cognition and behavior, Alzheimer's disease, medical care and neurobiology of Down syndrome .

National Down syndrome Society Form 990 13-2992567

Web Site

NDSS currently maintains three web sites, www.ndss .org, www.clubndss.org, and www.buddywalk.org . A resource for families, professionals, affiliates and others, the NDSS.org Web site handled more than 2.5 million requests for page views in 2003 . The NDSS site is a valuable tool for public education and information sharing and contains answers to common questions about Down syndrome, research and advocacy, updates on NDSS events and programs and much more. Club NDSS, a Web site geared towards people with Down syndrome, is unique in its attempt to directly impact the lives of people with Down syndrome and other cognitive disabilities . Finally, the Buddy Walk site provides information about the Buddy Walks held across the country each year and important tools and resources for walk organizers .

Affiliates NDSS works together with our affiliate network of 170 parent support groups and organizations, representing thousands of parents, family members and individuals with Down syndrome nationwide and abroad . This interdependent collaboration ensures that there are education, research and advocacy efforts on both the local and national level .

" If you are filing for an Automatic 3-Month Extension, complete only Part I and check this box . . . . . . . . . . . . . . . . . . . . Jo, IN " If you are filing for an Additional (not auitomatic) 3-Month Extension, complete only Part 11 (on page 2 of this form) . Note : Do not complete Part H unless you have already been granted an automatic 3-month extension on a previously filed F;orm 8868. Ltart Ij Automatic 3-Month Extension of Time - Only submit original (no copies needed) Note : Form 990-T corporations requesting an automatic 6-month extension - check this box and complete Part I only . . . . Iii. El A# other corporations (including Form 990-C filers) must use Form 7004 to request an extension of time to rile income tax returns . Partnerships, REMICs and trusts must use Form 8736 to request an extension of time to file Form 1065, 1066, or 104 1 .

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Form 990-EZ Form 990-T (trust other than above) F~ Form 6069 Form 990-PF Form 1041-A E] Form 8870

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b If this application is for Form 990-PF or 990-T, enter any refundable credits and estimated tax payments made . Include any prior year overpayment allowed as a credit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $

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Signature and Verification Under penalties of perjury, i declare that I have examined this form, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete, god tf!AW am authorized to prepare thij form

For Paperwork

Documents

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