The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome.
The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies is born with Down syndrome. Down syndrome occurs when an individual has a full or partial copy of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Down syndrome occurs in all races and economic levels. Today there are more than 400,000 people in the United States with Down syndrome.
The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome. NDSS provides state-of-the-art, comprehensive programming to all individuals with Down syndrome and their families with four main areas of programming which include: the National Advocacy & Policy Center, the National Buddy Walk® Program, Community Outreach and Resources and Public Awareness. NDSS maintains an aggressive, comprehensive legislative agenda than spans the life of an individual with Down syndrome. For more information visit www.ndss.org.
NDSS focuses on four areas of programming in order to meet our goals:
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 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 supported by a translation service that can be accessed in over 150 languages.
NDSS publishes new and expectant parent guides 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 Advocacy & Policy Center
The NDSS National Advocacy & Policy Center supports the mission of NDSS to be the national advocate for the value, acceptance and inclusion of people with Down syndrome by advocating for federal, state, and local policies that positively impact people with Down syndrome across the country. Most recent, NDSS spearheaded the historical passage of the landmark Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act.
The NDSS National Advocacy & Policy Center: Works with Congress and the Administration to develop and improve legislation Trains and educates parents, self-advocates and others to advocate on the local, state and national levels, through our cutting-edge grassroots NDSS DS-Ambassador program Organizes and participates in coalitions of national disability organizations Leads national and statewide Government Affairs Committees (GACs).
Public Awareness Initiatives
The purpose of public awareness at NDSS is to turn the mission of “value, acceptance and inclusion” into a comprehensive national public awareness message. NDSS proactively reaches out to national media outlets including television, print, radio, online and social media to secure editorial content on issues within the Down syndrome community as well as positive and inspirational news stories. NDSS monitors all forms of media on a daily basis, and responds to any inappropriate comments in an ongoing effort to educate and to promote accurate and positive messaging about Down syndrome. The My Great Story public awareness campaign seeks to ignite a new way of thinking about people with Down syndrome by sharing and telling stories which are displayed in a beautiful online storybook on the NDSS website. The stories are written by people with Down syndrome, their family members, friends, coworkers, teachers and others. Public service announcements for the campaign in both print and digital forms have been featured in national and local media outlets across the country. To view the campaign and share your story, or to vote and comment on stories already in the collection, visit www.ndss.org/stories.
National Buddy Walk® Program
The National Buddy Walk® Program, established in 1995, was created to promote the value, acceptance and inclusion of people with Down syndrome locally. It has grown to be the world’s largest and most recognizable Down syndrome awareness program. The Buddy Walk® is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals. Since inception, the National Buddy Walk® Program has grown from 17 Walks to more than 250 across the country and around the world. Each year, over 300,000 people participate in a Buddy Walk® and more than $13 million is raised to benefit local programs and services as well as national advocacy initiatives through NDSS that serve and support all people with Down syndrome.