National Down Syndrome Society
NDSS is a 501(c)(3) nonprofit founded in 1979 that advocates for individuals with Down syndrome across the lifespan through resources, federal and state policy work, and community events including the National Buddy Walk Program.
- Company typePrivate
- Founded1979
- HeadquartersNew York, United States
- Headcount11–50
- GTM typeB2B and B2C
- OfferingServices
What National Down Syndrome Society does
The National Down Syndrome Society (NDSS) is a 501(c)(3) nonprofit human rights organization headquartered in Washington, D.C. and founded in 1979. It serves individuals with Down syndrome and their families across the lifespan — from prenatal diagnosis through aging — operating through three integrated pillars: Resources & Support, Policy & Advocacy, and Community Engagement. Core offerings include the National Buddy Walk Program (200+ licensed events annually and the flagship NYC Buddy Walk in Times Square and Central Park), the Times Square Video Presentation featuring 500+ individuals with Down syndrome, lifespan-spanning resource portals, webinars, publications, and scholarships. Additional programs cover Education, Employment, Health & Wellness, Policy Advocacy (including Medicaid protection, organ transplant non-discrimination, ABLE accounts, and subminimum wage elimination), the NDSS Research Program, the DS-Ambassador grassroots advocacy program, and the Down Syndrome Advocacy Conference.
NDSS distributes programs through a national digital footprint anchored at ndss.org, a toll-free helpline (800-221-4602), and a multi-channel social presence across Facebook, Instagram, X, YouTube, LinkedIn, and TikTok. The Buddy Walk licensing model (2.5% fee in 2021) effectively creates a distributed franchise operation while keeping proceeds largely local. Funding is drawn from individual donations (give.ndss.org), corporate partnerships (Voya Cares, Eli Lilly, Lyft, The Linda and Mike Mussallem Foundation), government grants related to Medicaid, IDEA, and NIH, and signature fundraising events including the NYC Buddy Walk, DC Golf Outing, annual Gala & Auction, and Racing for 3.21. In 2023, NDSS completed a merger with the LuMind IDSC Foundation, and in late 2025 launched CARE Down Syndrome — a free online healthcare resource hub for adults with Down syndrome — supported by The Linda and Mike Mussallem Foundation. The organization is governed by a volunteer Board of Directors led by Chairwoman Tiffany Barfield, with Kandi Pickard serving as President and CEO since 2019. NDSS holds Platinum Transparency recognition from Candid (GuideStar) and is a Combined Federal Campaign-authorized charitable organization, supporting relatively transparent governance for a national advocacy nonprofit of its scale.
National Down Syndrome Society firmographics
Firmographics- Name
- National Down Syndrome Society
- Legal name
- National Down Syndrome Society
- Website
- https://ndss.org
- Company type
- Private
- Founded year
- 1979
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- NDSS is a 501(c)(3) nonprofit founded in 1979 that advocates for individuals with Down syndrome across the lifespan through resources, federal and state policy work, and community events including the National Buddy Walk Program.
- Ownership category
- akta.pro rank
National Down Syndrome Society industry classification
Industry- Product category
- Disability Advocacy and Down Syndrome Services
- NAICS
- Services for the Elderly and Persons with Disabilities (62412), Individual and Family Services (6241), Human Rights Organizations (813311), Child and Youth Services (624110)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600), Services-Health Services (8000)
- akta.pro primary industry
- Disability Services & Assistive Solutions (Accessibility, Assistive Tech) (BPAGALAM)
- akta.pro secondary industries
- Rare Disease & Special Needs Support Organizations (BPAGACAM), Minority, Indigenous & Disability Rights (BPADAGAH), Disability & Adaptive Sports Organizations (Paralympic, Special Olympics) (MPAKACAH), Community Health, Prevention & Health Education (BPAGACAC)
Keywords
Where National Down Syndrome Society is headquartered
LocationHeadquarters
- HQ city
- New York
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
National Down Syndrome Society business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Individual Donations: NDSS receives contributions from individual donors supporting the Down syndrome community through its donation platform at give.ndss.org.
- Corporate Partnerships: Strategic partnerships with corporations such as Voya Cares for entrepreneur grants and other sponsorships. Partnerships also include event sponsorships, cause marketing, and workplace giving campaigns.
- Government Grants: NDSS receives federal funding and engages in advocacy for government programs benefiting the Down syndrome community including Medicaid, IDEA, and NIH research funding.
- Buddy Walk Licensing: The organization licenses the Buddy Walk brand to local organizers, with a 2.5% licensing fee, allowing communities to host their own events while retaining majority of proceeds locally.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Others | Free resources and programs |
| Subscription | Annual | Buddy Walk licensing fee |
Go-to-market motion2 records
Distribution channels4 records
Marketing channels8 records
National Down Syndrome Society product offering
Product offeringCore offering
National Down Syndrome Society is a 501(c)(3) nonprofit human rights organization that delivers advocacy, community programs, and lifespan resources for individuals with Down syndrome. The core offering spans three pillars: Resources & Support (education, employment, health and wellness, and research programs), Policy & Advocacy (federal and state legislative advocacy on Medicaid, organ transplant discrimination, ABLE accounts, subminimum wage, and inclusive education), and Community Engagement (the National Buddy Walk Program with 200+ events, the annual Times Square Video presentation, conferences, and signature fundraising events). All primary resources are provided free to individuals with Down syndrome and their families.
Product overview
The National Down Syndrome Society operates as an advocacy nonprofit organization rather than a technology product company. Its offering consists of community programs, advocacy initiatives, and informational resources for individuals with Down syndrome and their families. The core programs include the National Buddy Walk Program (with nearly 150 events annually including the flagship NYC Buddy Walk in Times Square and Central Park), education and employment support programs, health and wellness resources, policy advocacy at federal/state levels, and a research program. Key resources include CARE Down Syndrome (healthcare hub), employment resources (resume guides, entrepreneurship support), inclusive education guidelines, and various advocacy toolkits. Events include the annual Gala & Auction, Family Weekend, Down Syndrome Advocacy Conference, and the Times Square Video presentation.
Differentiator
Problem solved
Functional benefit
Brands
- National Buddy Walk Program: Premier advocacy and awareness program for Down syndrome in the United States, with events held across the country and internationally since 1995.
- Buddy Walk
- Times Square Video Presentation
- NYC Buddy Walk
- DS-Ambassador Program
Products and services
- National Buddy Walk Program Premier advocacy, awareness, and peer-to-peer fundraising program for Down syndrome; nearly 150 events in the U.S. and 200+ events internationally under licensed Buddy Walk brand; flagship NYC Buddy Walk held in Times Square and Central Park. Open to individuals with Down syndrome, families, and local community organizers.
- CARE Down Syndrome Free online resource hub providing education, reference materials, and tools for healthcare professionals serving adults with Down syndrome. Audience: clinicians, primary care physicians, specialists, and allied health professionals in the U.S. Supported by The Linda and Mike Mussallem Foundation.
- DS-Ambassador Grassroots Advocacy Program Grassroots advocacy initiative empowering self-advocates and families to engage in federal and state legislative efforts on issues affecting the Down syndrome community. Audience: self-advocates, family advocates, and legislative representatives.
- NDSS Scholarships & Awards Financial support programs providing scholarships and awards to individuals with Down syndrome pursuing education and career goals. Audience: students and career-track individuals with Down syndrome.
- Down Syndrome Advocacy Conference Annual conference bringing together Down syndrome advocates to meet with congressional representatives and advance legislative priorities. Audience: advocates, family advocates, and self-advocates.
- NDSS Gala & Auction Annual fundraising gala celebrating thriving individuals with Down syndrome and supporting NDSS programs and initiatives. Audience: donors, corporate sponsors, and community supporters.
- NDSS Family Weekend Annual family-focused event providing opportunities for individuals with Down syndrome and their families to connect, learn, and celebrate together. Audience: individuals with Down syndrome and their families.
- Times Square Video Presentation Annual public awareness event displaying images of individuals with Down syndrome from around the world on video boards in Times Square, Duffy Square. Audience: general public, the Down syndrome community, and media.
Quantifiable outcome
- More than 200 Buddy Walk events held annually across the United States and international locations
- +2 more outcomes
Companies that use National Down Syndrome Society
Customer profileNamed customers5 records
Segments6 records
Ideal customer profiles4 records
National Down Syndrome Society technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature4 records
National Down Syndrome Society partnerships and signals
Strategic signalPartnerships
Nine partnerships are on record, tiered core and minor.
- Voya CarescoreNDSS and Voya Cares partner on entrepreneur grants for individuals with Down syndrome. In 2025, announced $20,000 in total grants for two entrepreneurs to support inclusion and community-building efforts. Partnership spans multiple years with annual grant programs during National Entrepreneur Month.
- UC Health's Timothy Freeman, MD, Center for Intellectual and Developmental DisabilitiescoreNDSS provided $100,000 gift to support a program manager for the center advancing care for adults with Down syndrome and other intellectual and developmental disabilities. Partnership aims to replicate the holistic care model nationally. The center serves approximately 1,000 adults with IDD.
- Down Syndrome Education International (DSEI)coreNDSS and DSEI partnered to create Down Syndrome: Guidelines for Inclusive Education - the first document of its kind in the United States providing evidence-based guidance for educating students with Down syndrome from early intervention through higher education.
- LuMind IDSC FoundationcoreMerger completed, combining organizations to strengthen advocacy and research impact. Joint CMS response letters on Alzheimer's treatments, COVID-19 resources, and advocacy priorities.
- Eli Lilly and CompanyminorCollaborative research partnership with LuMind IDSC Foundation and NDSS releasing findings on clinical trial participation by the Down syndrome community.
- LyftminorPartnership to remove transportation barriers through ABLE accounts, helping individuals with disabilities access transportation services.
- CoorDownminorNDSS partners with CoorDown to present the international awareness campaign 'JUST EVOLVE' promoting global awareness and inclusion for individuals with Down syndrome.
- Global Down Syndrome FoundationcoreJoint support for the Congressional Task Force on Down Syndrome alongside National Down Syndrome Congress. Collaborate on federal advocacy priorities including ABLE accounts, subminimum wage, and Alzheimer disease research.
- National Down Syndrome Congress (NDSC)coreJoint support for Congressional Task Force on Down Syndrome. Collaborative advocacy on federal policy priorities affecting the Down syndrome community.
Scale indicators8 records
Recent moves7 records
Expansion highlights6 records
National Down Syndrome Society competitors and assessment
Company assessmentBroad incumbents
- Best Buddies International: Nonprofit creating one-to-one friendships, employment, and leadership opportunities for people with intellectual and developmental disabilities. Comparable employment and community-inclusion programs serving overlapping populations including Down syndrome.
- Special Olympics: Global nonprofit providing sports training and competition for individuals with intellectual disabilities including Down syndrome. Overlaps with NDSS on adaptive sports advocacy and community events, but serves a broader IDD population.
- The Arc of the United States: Large national nonprofit serving people with intellectual and developmental disabilities including Down syndrome. Comparable federal advocacy and lifespan resources, with overlapping programs on employment, education, and community living.
Regional players
- CoorDown: Italian national Down syndrome organization that partnered with NDSS on the JUST EVOLVE international awareness campaign. Comparable mission but operates primarily in Italy, with international collaboration through NDSS.
Direct peers
- Down Syndrome Education International: Education-focused Down syndrome organization that partnered with NDSS to co-produce the U.S. Guidelines for Inclusive Education. Comparable mission around evidence-based educational support for individuals with Down syndrome.
- Global Down Syndrome Foundation: Major Down syndrome research and medical care nonprofit operating the Crnic Institute for Down Syndrome. Co-advocates with NDSS on federal policy but competes for research funding, donor dollars, and clinical trial engagement.
- LuMind IDSC Foundation: Research-focused Down syndrome nonprofit that merged into NDSS in 2023. Previously a direct peer, now an integrated component of NDSS, historically focused on biomedical research and clinical trial participation.
- National Down Syndrome Congress: National nonprofit dedicated to Down syndrome advocacy, resources, and policy engagement. Direct peer to NDSS with overlapping mission, federal advocacy agenda, and community events, jointly supporting the Congressional Task Force on Down Syndrome.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights7 records
Customer concentration
National Down Syndrome Society social profiles
Digital presenceNational Down Syndrome Society financial estimates
Financial estimateRevenue estimate
Valuation estimate
National Down Syndrome Society leadership team
Management profileNumber of profiles
Profiles8 records
National Down Syndrome Society funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
National Down Syndrome Society M&A and investment
M&A and investmentM&A1 record
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about National Down Syndrome Society
What does National Down Syndrome Society do?
National Down Syndrome Society is a 501(c)(3) nonprofit human rights organization that delivers advocacy, community programs, and lifespan resources for individuals with Down syndrome. The core offering spans three pillars: Resources & Support (education, employment, health and wellness, and research programs), Policy & Advocacy (federal and state legislative advocacy on Medicaid, organ transplant discrimination, ABLE accounts, subminimum wage, and inclusive education), and Community Engagement (the National Buddy Walk Program with 200+ events, the annual Times Square Video presentation, conferences, and signature fundraising events). All primary resources are provided free to individuals with Down syndrome and their families.
Is National Down Syndrome Society a public or private company?
National Down Syndrome Society is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was National Down Syndrome Society founded?
National Down Syndrome Society was founded in 1979. It employs 11 to 50 people.
Where is National Down Syndrome Society based?
National Down Syndrome Society is headquartered in New York, United States, in the North America region.
How does National Down Syndrome Society make money?
Four revenue lines are on record. Individual Donations are the primary driver. The others are corporate Partnerships, government Grants and buddy Walk Licensing.
Who are National Down Syndrome Society's main competitors?
Broad incumbents on record are Best Buddies International, Special Olympics and The Arc of the United States. CoorDown is listed as a regional player. Direct peers are Down Syndrome Education International, Global Down Syndrome Foundation, LuMind IDSC Foundation and National Down Syndrome Congress.
Does National Down Syndrome Society have an API?
No public API is recorded for National Down Syndrome Society.
What industry is National Down Syndrome Society in?
National Down Syndrome Society's product category is Disability Advocacy and Down Syndrome Services. Its primary akta.pro industry code is BPAGALAM, Disability Services & Assistive Solutions (Accessibility, Assistive Tech), with a secondary code of BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 62412 and its SIC code is 8300.