Since 1979, the National Down Syndrome Society has worked to achieve its vision of a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national advocate for the value, acceptance, and inclusion of people with Down syndrome.
NDSS is focused on four areas of programming: community support programs, the NDSS National Policy Center, public awareness initiatives and the National Buddy Walk® Program.
NDSS Community Support Programs
NDSS leads a network of over 350 affiliate groups across the country, consisting of local parent support groups and other organizations that provide services to the Down syndrome community. Some key services NDSS offers to its affiliates and to the Down syndrome community as a whole include:
- The Goodwin Family Information and Referral Center
Through its toll-free helpline and email service, NDSS receives more than 10,000 requests a year for information on Down syndrome. The Goodwin Family Information and Referral Center is also supported by a translation service that can be accessed in over 150 languages.
NDSS publishes A Promising Future Together: A Guide for New and Expectant Parents and informational brochures in both English and Spanish.
A comprehensive and up-to-date resource for families, professionals, affiliates and others, www.ndss.org receives over 3 million page views each year and includes an extensive Spanish translation.
NDSS National Policy Center
The NDSS National Policy Center is the advocacy arm of NDSS and strives to protect the rights and remove barriers for all individuals with Down syndrome. The work of the policy center is guided by its dynamic legislative agenda which includes a wide range of issues and touches every stage of life. These issues include education, health care, research, employment and independent living.
The NDSS National Policy Center:
- Works with Congress and federal agencies to develop and improve legislation
- Trains and educates parents, self-advocates and others to advocate on the local, state and national levels
- Organizes and participates in coalitions of national disability organizations
- Leads national and statewide Government Affairs Committees
NDSS Public Awareness Initiatives
The purpose of public awareness at NDSS is turn the mission of "value, acceptance and inclusion" into a positive, comprehensive national public awareness message. NDSS proactively reaches out to national media outlets including television, print, online media, and radio to secure editorial content on issues within the Down syndrome community, as well as to secure positive and inspirational news stories. NDSS monitors all forms of media on a daily basis, 365 days a year.
My Great Story is the largest NDSS public awareness campaign. Its goal is to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them, which are displayed in a unique online storybook.
National Buddy Walk® Program
The Buddy Walk® is a national Walk program created by NDSS to promote acceptance and inclusion of people with Down syndrome and to raise funds for local and national initiatives that support people with Down syndrome and their families. The Buddy Walk began in 1995 as a public awareness and advocacy effort with 17 Walks. A fundraising component was added in 1999. Today there are over 250 registered Walks with over 285,000 Walkers, which raise approximately $11 million annually across the country.
About Down Syndrome
There are approximately 400,000 people living with Down syndrome in the United States. Millions of people are impacted by Down syndrome—including family members, educators, employers, healthcare professionals, peers and others.
Down syndrome affects people of all ages, races and economic levels. It is the most commonly occurring genetic condition. One in every 691 babies is born with Down syndrome.
Quality educational programs, a stimulating home environment, good medical care and positive support from family, friends and the community at large enable people with Down syndrome to develop their full potential and lead fulfilling lives. They attend school, make friends, find work, and participate in decisions that affect them, and contribute to society.