National Down Syndrome Society

Charity Profile

National Down Syndrome Society

🇺🇸Healthcare#12 last 12 months
Revenue
$4,700,000
Last 12 months
Reach
United States
Verified footprint
Entries
52
Logged on Charity Journal

Giving over time

Monthly giving from the ledger
Giving and impact by month, last 12 months
MonthGivenImpact bandActivities logged
Nov 2025$0Not rated0
Dec 2025$0Not rated0
Jan 2026$0Not rated0
Feb 2026$0Not rated0
Mar 2026$0Moderate1
Apr 2026$0Not rated0
May 2026$0Moderate1
Jun 2026$0Not rated0
Jul 2026$0Moderate1
Aug 2026$0Moderate1
Sep 2026$0Limited1
Oct 2026$0Not rated0

Cause breakdown

Arts$0 · 0%
Health$0 · 0%
Human Rights$0 · 0%
Education$0 · 0%
Science$0 · 0%
Innovation$0 · 0%
National Down Syndrome SocietyVerified
HealthcareUnited StatesEst. 1979Kandi Pickard

About

The National Down Syndrome Society advocates for people with Down syndrome and works to promote their inclusion, independence and quality of life. Its programs provide resources and support to individuals and families while addressing issues affecting education, employment, healthcare and community participation.

The organization also works on public policy and disability rights while bringing communities together through advocacy and engagement programs. Its initiatives include educational resources, family support, the Adult Summit, the Buddy Walk program and campaigns aimed at improving opportunities for people with Down syndrome.

Activity feed

National Down Syndrome Society partnered on a three-week New York exhibition featuring artists with Down syndrome and provided a public platform for their work, creativity and advocacy on 2026-09-11. Cause: Arts.
National Down Syndrome Society→ Assume I Can exhibition
Artspartnered on a three-week New York exhibition featuring artists with Down syndrome and provided a public platform for their work, creativity and advocacy
National Down Syndrome Society launched a free one-hour digital course that trains clinical research teams to work effectively with people with Down syndrome and create more accessible research environments on 2026-08-18. Cause: Health.
National Down Syndrome Society→ MinDSet Down Syndrome
Healthlaunched a free one-hour digital course that trains clinical research teams to work effectively with people with Down syndrome and create more accessible research environments
National Down Syndrome Society expanded its free clinical education program to nurses, allowing them to earn up to 6.25 ANCC contact hours while learning about healthcare for adults with Down syndrome on 2026-07-15. Cause: Health.
National Down Syndrome Society→ CARE Down Syndrome education
Healthexpanded its free clinical education program to nurses, allowing them to earn up to 6.25 ANCC contact hours while learning about healthcare for adults with Down syndrome
National Down Syndrome Society brought advocates to Washington, D.C. for policy and advocacy training and congressional engagement on issues affecting people with Down syndrome on 2026-05-11. Cause: Human Rights.
National Down Syndrome Society→ Down Syndrome Advocacy Conference
Human Rightsbrought advocates to Washington, D.C. for policy and advocacy training and congressional engagement on issues affecting people with Down syndrome
National Down Syndrome Society partnered with CoorDown and international organizations on the annual World Down Syndrome Day awareness campaign on 2026-03-13. Cause: Human Rights.
National Down Syndrome Society→ Just Evolve awareness campaign
Human Rightspartnered with CoorDown and international organizations on the annual World Down Syndrome Day awareness campaign
National Down Syndrome Society supported enactment of the ENABLE Act, which permanently increased ABLE contribution limits, added a saver's tax credit and allowed certain 529 rollovers on 2025-07-01. Cause: Human Rights.
National Down Syndrome Society→ ABLE account advocacy
Human Rightssupported enactment of the ENABLE Act, which permanently increased ABLE contribution limits, added a saver's tax credit and allowed certain 529 rollovers
National Down Syndrome Society helped advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act through the House after the bill was reintroduced in the 119th Congress on 2025-06-23. Cause: Human Rights.
National Down Syndrome Society→ Organ-transplant advocacy
Human Rightshelped advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act through the House after the bill was reintroduced in the 119th Congress
National Down Syndrome Society brought more than 400 advocates to Washington, D.C. for policy training and more than 200 congressional meetings concerning Medicaid, education, employment, healthcare and benefits on 2025-04-01. Cause: Health.
National Down Syndrome Society→ Down Syndrome Advocacy Conference
Healthbrought more than 400 advocates to Washington, D.C. for policy training and more than 200 congressional meetings concerning Medicaid, education, employment, healthcare and benefits
National Down Syndrome Society hosted its annual virtual World Down Syndrome Day event, bringing thousands of participants together for 3.21-mile activities on 2025-03-21. Cause: Health.
Healthhosted its annual virtual World Down Syndrome Day event, bringing thousands of participants together for 3.21-mile activities
National Down Syndrome Society supported nearly 150 Buddy Walk events, including seven new events and the first international launch in Jamaica, with organizer resources and monthly webinars on 2025-01-01. Cause: Human Rights.
National Down Syndrome Society→ Buddy Walk network
Human Rightssupported nearly 150 Buddy Walk events, including seven new events and the first international launch in Jamaica, with organizer resources and monthly webinars
National Down Syndrome Society awarded 14 scholarships to self-advocates with Down syndrome pursuing education beyond high school on 2025-01-01. Cause: Education.
National Down Syndrome Society→ Bright Futures scholarships
Educationawarded 14 scholarships to self-advocates with Down syndrome pursuing education beyond high school
National Down Syndrome Society operated a network of nearly 275 volunteer advocates, providing monthly training and a web portal to help them engage government decision-makers on 2025-01-01. Cause: Human Rights.
National Down Syndrome Society→ DS-Ambassador program
Human Rightsoperated a network of nearly 275 volunteer advocates, providing monthly training and a web portal to help them engage government decision-makers
National Down Syndrome Society trained 76 practicing genetic counselors/geneticists, 100 genetic-counselor students and 20 LEND trainees and supported 12 monthly DSMIG Project ECHO sessions involving 21 to 48 healthcare professionals each on 2025-01-01. Cause: Health.
National Down Syndrome Society→ Healthcare provider education
Healthtrained 76 practicing genetic counselors/geneticists, 100 genetic-counselor students and 20 LEND trainees and supported 12 monthly DSMIG Project ECHO sessions involving 21 to 48 healthcare professionals each
National Down Syndrome Society launched the CANDID Project with the WITH Foundation to analyze Home and Community-Based Services Medicaid data from 15 states on 2025-01-01. Cause: Science.
National Down Syndrome Society→ CANDID research project
Sciencelaunched the CANDID Project with the WITH Foundation to analyze Home and Community-Based Services Medicaid data from 15 states
National Down Syndrome Society published resources on nutrition, sleep apnea, sleep studies and caregiving, and delivered four health webinars attended live by 755 people with another 4,220 recording views on 2025-01-01. Cause: Health.
National Down Syndrome Society→ Health and caregiver resources
Healthpublished resources on nutrition, sleep apnea, sleep studies and caregiving, and delivered four health webinars attended live by 755 people with another 4,220 recording views
National Down Syndrome Society hosted 10 employment webinars reaching more than 1,000 live attendees and supported employers, job seekers and stakeholders with technical assistance on 2025-01-01. Cause: Innovation.
National Down Syndrome Society→ Employment training
Innovationhosted 10 employment webinars reaching more than 1,000 live attendees and supported employers, job seekers and stakeholders with technical assistance
National Down Syndrome Society presented at five conferences, reaching more than 4,000 special-education professionals, families and self-advocates, and delivered webinars on transition planning and inclusive education on 2025-01-01. Cause: Education.
National Down Syndrome Society→ Education outreach
Educationpresented at five conferences, reaching more than 4,000 special-education professionals, families and self-advocates, and delivered webinars on transition planning and inclusive education
National Down Syndrome Society brought more than 300 individuals, caregivers and professionals to Costa Mesa for education on entrepreneurship, transition planning, Alzheimer's research, women's health, ABLE accounts and fitness on 2024-11-01. Cause: Education.
Educationbrought more than 300 individuals, caregivers and professionals to Costa Mesa for education on entrepreneurship, transition planning, Alzheimer's research, women's health, ABLE accounts and fitness
National Down Syndrome Society presented photos of 500 people with Down syndrome in Times Square and hosted the 30th New York City Buddy Walk in Central Park to promote inclusion and public awareness on 2024-09-07. Cause: Human Rights.
Human Rightspresented photos of 500 people with Down syndrome in Times Square and hosted the 30th New York City Buddy Walk in Central Park to promote inclusion and public awareness
National Down Syndrome Society advised Mattel and a Down syndrome community focus group on the design and representation of the first Black Barbie doll with Down syndrome on 2024-07-23. Cause: Human Rights.
National Down Syndrome Society→ Black Barbie with Down syndrome
Human Rightsadvised Mattel and a Down syndrome community focus group on the design and representation of the first Black Barbie doll with Down syndrome

Board

Tom Warner
Chair

Vice President of Undersea Warfare Programs and General Manager of Manassas Operations at Lockheed Martin.

Misty Holmes
Audit Chair

Executive Director of Strategic Strike Programs at Raytheon Missiles & Defense.

John Short
Treasurer

Chief Growth Officer at Kearney & Company.

Janet Slaughter Eissenstat
Secretary

Retired.

Candace Whiting
Deputy Secretary

Motivational speaker and entrepreneur who holds the board seat reserved for a self-advocate with Down syndrome in honor of Mia Peterson.

John McGuire
Audit Chair

Partner and Global Head of the Conflicts Resolution Group at Goldman Sachs.

Elizabeth F. Goodwin
Founder and Board Member Emeritus

Co-founded the organization after her daughter Carson was born with Down syndrome in 1978.

Hector Guinness
Executive Committee Member

Partner at Hg Capital.

Anthony Providenti
Executive Committee Member

Regional President at Antech Diagnostics.

Carlo Frappolli
Board Member/Past Board Chair

Sibling advocate and founder of FRAPPSTRONG who spent more than two decades as a JPMorgan Chase executive.

LaSandra Brill
Board Member

Vice President of Global Digital Marketing at NVIDIA.

Karen Gaffney
Board Member

President of the Karen Gaffney Foundation.

Courtney Gaines
Board Member

Serves on the board as a self-advocate with Down syndrome.

Schunda Jones-Murphy
Board Member

Assistant Special Services Director at Wynne School District.

Joe Joyce
Board Member

Chief of Staff at Keystone Insurers Group.

Michael Kulma
Board Member

Associate Director of Programs and Communications at International House at the University of Chicago.

Beverly Paperiello
Board Member

Chief Operating Officer at Heartwood BioPharma Group.

Tom Santos
Board Member

Assistant Vice President of Federal Affairs at Zurich North America.

Kerry Sette
Board Member

Vice President and Head of Consumer Insights and Research at Voya Financial.

Marjorie C. Shavers
Board Member

Associate Dean in the College of Education at Missouri State University.

Ciara Siegel
Board Member

Founder and CEO of CJC.

C. Mitch Taylor
Board Member

Senior Advisor and government affairs lobbyist at the Society for Human Resource Management.

Victoria Tremonti
Board Member

Parent and advocate for families affected by Down syndrome.

Ludivine Van Der Heyden
Board Member

Pro bono immigration attorney at Cleary Gottlieb Steen & Hamilton LLP.

Dr. Lauren Wang
Board Member

Medical Director and Assistant Professor at the Center for Intellectual Developmental Disabilities at UC Health and the University of Cincinnati.