Skip to content
Nonprofiteer
← GLOBAL DOWN SYNDROME FOUNDATION

Form 990 for tax year 2024

Filed by GLOBAL DOWN SYNDROME FOUNDATION.

Totals

Total revenue
$4,716,290
Total expenses
$4,697,476
Contributions and grants received
$4,520,184
Grants paid
$789,464
Program service revenue
$4,017
Investment income
$192,089
Other revenue
$0
Total assets, end of year
$8,688,920
Total liabilities, end of year
$1,403,074
Net assets or fund balances, end of year
$7,285,846
Program services expenses (Part IX)
$3,405,300
Management and general expenses
$724,918
Fundraising expenses
$567,258
Program service expenses (Part III)
$3,405,300

Program services were 72.5% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

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

Revenue

Part VIII, the statement of revenue.

  • 1b · Membership dues

    $80,785

  • 1c · Fundraising events

    $1,720,338

  • 1d · Related organizations

    $1,355,650

  • 1f · All other contributions, gifts and grants

    $1,363,411

  • 1g · Noncash contributions included above

    $118,999

  • 2a · Program service revenue: REGISTRATIONS

    total $4,017 · related or exempt $4,017

  • 3 · Investment income

    total $208,696 · excluded $208,696

  • 7b · Less cost or other basis and sales expenses

    securities $16,607

  • 7c · Gain or loss

    securities -$16,607

  • 7d · Net gain or loss

    total -$16,607 · excluded -$16,607

  • 8a · Fundraising events: gross income

    $801,887

  • 8a · Fundraising events: contributions included on line 1c

    $1,720,338

  • 8b · Fundraising events: direct expenses

    $801,887

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $774,464 · program services $774,464

  • 3 · Grants to foreign organizations and individuals

    total $15,000 · program services $15,000

  • 5 · Compensation of officers, directors and key employees

    total $322,790 · program services $252,941 · management and general $44,991 · fundraising $24,858

  • 7 · Other salaries and wages

    total $1,425,102 · program services $1,116,722 · management and general $198,633 · fundraising $109,747

  • 9 · Other employee benefits

    total $213,937 · program services $167,643 · management and general $29,819 · fundraising $16,475

  • 10 · Payroll taxes

    total $66,885 · program services $52,412 · management and general $9,322 · fundraising $5,151

  • 11b · Fees: legal

    total $2,340 · management and general $2,340

  • 11d · Fees: lobbying

    total $208,500 · program services $208,500

  • 11f · Fees: investment management

    total $5,594 · management and general $5,594

  • 11g · Fees: other

    total $474,879 · program services $150,899 · management and general $287,759 · fundraising $36,221

  • 13 · Office expenses

    total $240,182 · program services $75,396 · management and general $100,855 · fundraising $63,931

  • 17 · Travel

    total $306,761 · program services $194,930 · management and general $4,370 · fundraising $107,461

  • 22 · Depreciation, depletion and amortization

    total $136,322 · program services $136,322

  • 24a · Other expenses: FOOD, SUPPLIES, AND MISC

    total $404,553 · program services $219,431 · management and general $34,978 · fundraising $150,144

  • 24b · Other expenses: PUBLIC RELATIONS

    total $100,167 · program services $40,640 · management and general $6,257 · fundraising $53,270

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $406,196 · end of year $508,123

  • 2 · Savings and temporary cash investments

    beginning of year $3,566,199 · end of year $3,450,063

  • 3 · Pledges and grants receivable

    beginning of year $387,827 · end of year $362,504

  • 8 · Inventories for sale or use

    beginning of year $15,071 · end of year $17,429

  • 9 · Prepaid expenses and deferred charges

    beginning of year $122,115 · end of year $217,364

  • 10a · Land, buildings and equipment: cost or other basis

    $2,276,008

  • 10b · Land, buildings and equipment: accumulated depreciation

    $994,120

  • 10c · Land, buildings and equipment, net

    beginning of year $1,418,209 · end of year $1,281,888

  • 11 · Investments: publicly traded securities

    beginning of year $2,730,395 · end of year $2,851,549

  • 17 · Accounts payable and accrued expenses

    beginning of year $260,405 · end of year $144,815

  • 18 · Grants payable

    beginning of year $565,000 · end of year $696,000

  • 19 · Deferred revenue

    beginning of year $57,538 · end of year $59,199

  • 25 · Other liabilities

    beginning of year $513,360 · end of year $503,060

  • 27 · Net assets without donor restrictions

    beginning of year $5,890,986 · end of year $5,931,451

  • 28 · Net assets with donor restrictions

    beginning of year $1,358,723 · end of year $1,354,395

Mission and programs · 2024

Mission

TO SIGNIFICANTLY IMPROVE THE LIVES OF PEOPLE WITH DOWN SYNDROME THROUGH RESEARCH, MEDICAL CARE, EDUCATION AND ADVOCACY. AN IMPORTANT PART OF THIS MISSION IS TO SUPPORT THE GLOBAL AFFILIATE ORGANIZATIONS THAT WE HELPED ESTABLISH AND CONTINUE TO FUNDRAISE FOR. GLOBAL AND OUR AFFILIATES WORK TOGETHER TO ELONGATE LIFE AND DRAMATICALLY IMPROVE HEALTH OUTCOMES TO ENSURE PEOPLE WITH THE CONDITION CAN REACH THEIR TRUE POTENTIAL. GLOBAL AFFILIATES INCLUDE: CRNIC INSTITUTE FOR DOWN SYNDROME, ALZHEIMER'S & COGNITION CENTER, SIE CENTER FOR DOWN SYNDROME, AND GLOBAL ADULT CLINIC. ANOTHER IMPORTANT PART OF OUR MISSION IS TO ENGAGE IN GOVERNMENT ADVOCACY THAT LEADS TO TRANSFORMATIVE INCREASES IN GOVERNMENT FUNDING FOR DOWN SYNDROME RESEARCH AND MEDICAL CARE WHICH IN TURN WILL CREATE A PIPELINE OF YOUNG TALENT DEDICATED TO THIS POPULATION. BECAUSE OF GLOBAL'S WORK, SCIENTISTS ARE DEVELOPING BETTER METHODS TO UNDERSTAND HOW THE TRIPLICATION LEADS TO A MUCH HIGHER INCIDENCE OF CERTAIN DISEASES (FOR EXAM

Activities or mission (Part I)

TO SIGNIFICANTLY IMPROVE THE LIVES OF PEOPLE WITH DOWN SYNDROME THROUGH RESEARCH, MEDICAL CARE, EDUCATION, AND ADVOCACY.

  • RESEARCH AND CLINICAL CARE: DOWN SYNDROME IS WHEN A PERSON IS BORN WITH THREE COPIES OF CHROMOSOME 21 INSTEAD OF THE USUAL TWO. BEFORE GLOBAL WAS ESTABLISHED, DOWN SYNDROME WAS THE LEAST FUNDED GENETIC CONDITION BY THE NATIONAL INSTITUTES OF HEALTH (NIH) AND VERY LITTLE WAS BEING DONE TO INCREASE RESEARCH OR CREATE EVIDENCE-BASED MEDICAL CARE GUIDELINES. -GLOBAL ESTABLISHED THE FIRST DOWN SYNDROME RESEARCH AND MEDICAL CARE INSTITUTE IN OUR COUNTRY - OUR AFFILIATE, THE CRNIC INSTITUTE FOR DOWN SYNDROME. -GLOBAL ESTABLISHED ONE OF THE LARGEST DOWN SYNDROME MEDICAL CENTERS IN THE WORLD SERVING 2,500+ CHILDREN WITH DOWN SYNDROME FROM 35 STATES AND 11 COUNTRYS - OUR AFFILIATE THE SIE CENTER FOR DOWN SYNDROME. -GLOBAL SUCCESSFULLY LOBBIED AND ADVOCATED FOR THE ESTABLISHMENT OF THE TRANS-NIH DOWN SYNDROME RESEARCH PROGRAM CALLED "INCLUDE- AND HAVE LED TO THE RENAISSANCE OF DOWN SYNDROME RESEARCH TODAY. -GLOBAL SUCCESSFULLY LOBBIED AND ADVOCATED FOR THE NATIONAL INSTITUTES OF AGING TO LAUNCH THEIR LONGITUDINAL AD-DS BIOMARKER GRANTS. -GLOBAL CREATED THE FIRST EVIDENCED-BASED GLOBAL MEDICAL CARE GUIDELINES FOR ADULTS WITH DOWN SYNDROME PUBLISHED IN THE JOURNAL OF AMERICAN MEDICAL JOURNAL (JAMA) -GLOBAL ESTABLISHED THE BE BEAUTIFUL BE YOURSELF FASHION SHOW, THE WORLD'S LARGEST FUNDRAISER BENEFITTING PEOPLE WITH DOWN SYNDROME AND THE ACCEPTABILITY GALA, THE FIRST DOWN SYNDROME RESEARCH FUNDRAISER IN WASHINGTON DC, -GLOBAL ORGANIZED THE: FIRST DOWN SYNDROME RESEARCH SUMMIT IN THE US IN 2006 HEADED BY NOBEL LAUREATE TOM CECH FIRST DOWN SYNDROME RESEARCH CONFERENCE AT NIH IN 2010 FOCUSED ON DATABASES, BIOBANKS & REGISTRIES WHICH RESULTED IN NIH CREATING THE DSCONNECTS DOWN SYNDROME REGISTRY FIRST DOWN SYNDROME & ALZHEIMER'S DISEASE WORKSHOP IN COLLABORATION WITH THE ALZHEIMER'S ASSOCIATION AND NIA IN 2012 FIRST DOWN SYNDROME & ALZHEIMER'S DISEASE RESEARCH GRANTS CO-FUNDED BY GLOBAL AND THE ALZHEIMER'S ASSOCIATION. GLOBAL IS DELIVERING ON OUR MISSION THROUGH GROUNDBREAKING RESEARCH WITH OUR AFFILIATES. FOR EXAMPLE WE HAVE: - DISCOVERED THAT DOWN SYNDROME IS AN IMMUNE SYSTEM DISORDER AND WE HAVE CONDUCTED TWO CLINICAL TRIALS TESTING DRUGS THAT NORMALIZE THE IMMUNE SYSTEM AND HAVE HAD PROFOUND RESULTS; WE ARE CURRENTLY ORGANIZING A 3RD SUCH CLINICAL TRIAL - HOLD AN NIH INCLUDE CLINICAL TRIAL GRANT AIMED AT EFFECTIVELY TREATING DOWN SYNDROME REGRESSION DISORDER - DISCOVERED THAT PEOPLE WITH DOWN SYNDROME ARE HYPOXIC - DISCOVERED THREE DISTINCT PHENOTYPES IN DOWN SYNDROME THAT COULD LEAD TO MORE EFFECTIVE "PRECISION MEDICINE" - SUPPORTED THE FIRST CLINICAL TRIALS TESTING PROMISING ALZHEIMER'S DRUGS IN PEOPLE WITH DOWN SYNDROME - PUBLISHED "THE" BEHAVIORAL GUIDELINES FOR CHILDREN WITH DOWN SYNDROME - CREATED A RUBRIC FOR TEST CHILDREN WITH DOWN SYNDROME FOR DYSPHAGIA - PUBLISHED GROUNDBREAKING NATURAL HISTORY STUDIES IN INFANTILE SPASMS, PHYSICAL THERAPY, NEUROLOGY AND MORE.

    Expenses $1,668,619 · Grants $627,200

  • OUTREACH, EDUCATION, AND CONFERENCES: GLOBAL OFFERS A VARIETY OF RESEARCH AND MEDICAL OUTREACH MEETINGS, WORKSHOPS, WEBINARS, EDUCATIONAL PROGRAMS, AND CLASSES DESIGNED TO SUPPORT AND IMPROVE THE LIVES OF GLOBAL 'S SELF- ADVOCATES, FAMILY MEMBERS AND PROFESSIONALS SERVING OUR COMMUNITY. MANY OF OUR EDUCATIONAL PROGRAMS INVOLVE BUILDING SKILLS, BUILDING SELF-ESTEEM AND FOSTERING INDEPENDENCE.

    Expenses $1,736,681 · Grants $162,264 · Revenue $4,017

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Michelle Sie Whitten

    PRESIDENT AN

    Total calculated
    $347,276
    From this org
    $154,756
    From related orgs
    $154,756
    Other
    $37,764
    Hours/week
    20 + 20 related

    Schedule J breakdown matched by us

    Base
    $133,132 + $133,132 related
    Bonus
    $21,624 + $21,624 related
    Other
    not reported
    Deferred
    not reported
    Nontaxable benefits
    $18,882 + $18,882 related
    Filer's total
    $173,638 + $173,638 related

  • John J Sie

    CHAIR

    Total calculated
    $0
    Hours/week
    1.5 + 1 related

  • Mary Beth Wallingford

    TREASURER

    Total calculated
    $0
    Hours/week
    3

  • Richard Waysdorf

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • John C McGinley

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Jay Mills

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Ricki Rest

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Tomago Collins

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Charlie Monfort

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Frank Stephens

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Peter Kudla

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Jamie Nielsen

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

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

Schedule J

Answered yes

  • 1a · First-class or charter travel
  • 1b · Written policy on the line-1a expenses
  • 2 · Substantiation required before reimbursing expenses
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 7 · Other non-fixed payments

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

SCHEDULE J, PAGE 1, PART I, LINE 1A
FIRST-CLASS TRAVEL IS PROVIDED AS A COURTESY FOR A CERTAIN BOARD MEMBER WHO HAS CELEBRITY STATUS.
SCHEDULE J, PAGE 1, PART I, LINE 3
THE BOARD OF DIRECTORS REVIEWS COMPENSATION LEVELS FOR ALL EMPLOYEES USING COMPARABILITY STUDIES TO DETERMINE APPROPRIATE SALARY RANGES.
SCHEDULE J, PAGE 1, PART I, LINE 7
THE BOARD APPROVES BONUSES RELATED TO EMPLOYMENT PERFORMANCE.

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

Grants on this return

Related organizations on this return

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

Provenance

Return type
form_990
Tax year
2024
Filed
21 January 2025
IRS schema version
2024v5.0
Source object
202630219349301153

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

The source document this was parsed from is served over the API, which is where bulk and document access live.