National Down Syndrome Society

Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. NDSS engages grassroots advocates at the federal, state, and local levels and creates resources to support individuals with Down syndrome, their families, and caregivers across the lifespan on topics including education, employment, health and wellness, and aging. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference.

Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. The organization’s work is achieved through three key areas of programming: Resources & Support, Policy & Advocacy, and Community Engagement.

Resources & Support
NDSS is committed to providing individuals with Down syndrome, their families, caregivers, and the public with information to support them from birth to end of life. Through events, videos, publications, and our website, NDSS provides free resources on a variety of topics including health, wellness, education, employment, adulthood and aging, financial wellness, and information for new and expectant parents. Our Adult Summit conference addresses the needs of teens and adults with practical resources and educational opportunities for individuals with Down syndrome, families, caregivers, and professionals. Through our helpline and info email, our staff responds to questions and connects individuals with Down syndrome, family members, professionals, and others with referrals to our network of more than 300 local Down syndrome organizations.

Policy & Advocacy
NDSS advocates for federal, state, and local policies and regulations that positively impact people with Down syndrome across the country and affirm their human rights. Through grassroots advocacy, NDSS empowers community advocates to work with Congress and federal agencies, as well as state and local officials, to develop and improve policies and regulations for the benefit of the Down syndrome community. NDSS further empowers individuals with Down syndrome, their families, and other community members to influence policy at the NDSS Down Syndrome Advocacy Conference in Washington, D.C. The NDSS legislative agenda spans the life of individuals with Down syndrome from birth to adulthood including healthcare, education, employment, and economic self-sufficiency.

Community Engagement
NDSS community engagement events and activities celebrate our loved ones with Down syndrome, raise awareness among the public, and connect individuals and families within the community. Through our scholarships, grants, and awards program, NDSS supports individuals with Down syndrome in pursuing their dreams. Since 1995, the National Buddy Walk® Program has promoted awareness and inclusion of people with Down syndrome and raised funds for local and national organizations that support the community. NDSS hosts awareness and engagement events throughout the country including our New York City Buddy Walk® and Times Square Video presentation, Racing for 3.21 on World Down Syndrome Day, Run for 3.21, gala and golf events, and more.

NDSS has more than 40 years of experience supporting the Down syndrome community. Our affiliation with a network of 300+ Down syndrome organizations and groups worldwide helps us further our mission and ensure we are meeting the broad needs of the community.

NDSS is supported by a strong board of directors, an experienced staff, and a loyal community of supporters. Additionally, we work closely with experts and professionals who consult and advise as we develop and disseminate new resources to support individuals with Down syndrome, their families, and caregivers.

Over the past year NDSS has made significant progress in fulfilling our mission.
• More than 2,000 individuals received personalized support via our helpline and info email box on topics like employment, Alzheimer’s disease and aging, welcoming a baby with Down syndrome, and how to connect with local support.
• More than $40,000 was awarded in scholarships and grants to 35 adults with Down syndrome as they pursue their education, develop their passion for the arts, expand their business, and celebrate their accomplishments
• Nearly 400 attendees learned about transition, aging, and Down syndrome research through our 2022 Adult Summit: On the Road events in Jacksonville and Indianapolis.
• Caregivers of individuals with Down syndrome are equipped with resources, support, and advice on financial wellness, mental health, aging, Alzheimer’s disease and more.
• Self-advocates, parents, and teachers have access to best practices for improving outcomes for students with Down syndrome through our newly-published Down Syndrome: Guidelines for Inclusive Education.
• Our 321go! wellness program was launched to promote physical activity, balanced nutrition, and emotional wellness to support a healthy future for our loved ones with Down syndrome.
• More than 125 local Buddy Walk® events, with the addition of five new locations, were supported with monthly webinars, trainings, and newly created resources.
• NDSS hosted the first Down Syndrome Policy Symposium, gathering the six largest Down syndrome organizations in the U.S. to build better working relationships and concrete strategies aimed at tackling policy issues most critical to the Down syndrome community.
• More than 2,000 grassroots advocates were informed of critical legislation and took action to contact their representatives.
• Bills ending discrimination in organ transplantation against people with disabilities have passed in Arizona, Mississippi, Nevada, North Carolina, South Dakota, West Virginia and Wisconsin, and federal legislation was introduced in the House and Senate.
• Hundreds of law enforcement officers and first responders in Indiana, Kentucky, Pennsylvania, and West Virginia received training on how to support individuals with disabilities in their communities.
• New federal legislation, the ABLE Employment Flexibility Act, which would enable employers to help their employees with disabilities pay for qualified disability expenses, was introduced.
• Legislation to phase out subminimum wage was passed in Rhode Island, South Carolina, and Tennessee.
• NDSS galvanized the community to speak as one voice about proposed coverage of Alzheimer’s disease treatments for people with Down syndrome and took an important step toward health equity.