NDSS is the largest nonprofit in the United States dedicated to advocating for people with Down syndrome and their families. Since 1979, NDSS has helped the Down syndrome community make great strides in enhancing the lives of people with Down syndrome. As the national advocate for people with Down syndrome, our goal is to ensure that individuals with Down syndrome are fully participating members of our communities. 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
NDSS just celebrated the 20th anniversary of the National Buddy Walk® Program, which was established in 1995, 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.
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.