Global Down Syndrome Foundation
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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
- Income
- $4.7 million
- Spending
- $4.7 million
- Spent on programs
- 73%
- Reserves
- 11.9 months of spending
- Largest source of income
- donations and private grants, 96%
- Employees
- 25
- Volunteers
- 239
- Highest pay
- $347,276, president an
Source: Form 990 for the year ending July 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 86 out of 100. Higher than 71% of charities in its peer group (health care, $1m to $10m).
Reserves
28 of 35Spendable reserves would cover 11.9 months of spending.
Debt
16 of 20It owes 16% of what it owns.
Living within its means
12 of 15Income exceeded spending by 0% of income.
Income trend
15 of 15Income rose 9% on the year before.
Spending floor
15 of 1572% of spending went to programs and raising each dollar of donations cost 13 cents.
Source: Form 990 for the year ending July 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 67% of charities in its peer group (health care, $1m to $10m).
Independent board
25 of 258 of 12 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending July 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (2)
- $1.7 million spent. 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. 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.
- $1.7 million spent. 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.
Source: Form 990 for the year ending July 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending July 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since December 2009.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.
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