Our History

1980's

NDSS began its ongoing work to increase general public awareness and acceptance of people with Down syndrome. NDSS initiated its first awareness campaign with a baseball-themed public service advertisement titled “Give these kids a chance at bat,” which appeared in several magazines, including Time.

NDSS worked to have October officially proclaimed “Down Syndrome Awareness Month,” and this designation continues today.

1990's

The Buddy Walk®, introduced in 1995, was a major breakthrough in promoting the acceptance and inclusion of all people with Down syndrome. There were 17 walks in 1995 and over 250 today.

NDSS hosted a three-day advocacy meeting in Washington, DC with the theme, Voices for Change: Advocacy for the 21st Century. NDSS affiliate group leaders and self-advocates attended training sessions on effective advocacy and leadership and met with Congressional Representatives.

Early 2000's

NDSS established its National Policy Center in Washington, D.C. to work with members of Congress and federal agencies to develop and improve laws, regulations and other policies; train and educate parents, self-advocates and others to advocate on the local, state and national levels; lead and participate in coalitions of national disability organization, and lead a comprehensive national advocacy program for Down syndrome.

The Buddy Walk® was ranked in the top 30 fundraising events nationwide for money raised, revenue increase and best series event.

Late 2000's

NDSS also established the Joshua O’Neill and Zeshan Tabani Enrichment Fund to offer financial assistance to young adults with Down syndrome who are interested in enriching their lives by taking classes or enrolling in postsecondary educational programs.

In 2009, NDSS announced its revised mission and vision, which supports its commitment to being the national advocate for the value, acceptance and inclusion of people with Down syndrome. This included a focus on four areas of programming: Community Support, the NDSS National Policy Center, Public Awareness and the National Buddy Walk® Program.

2010-2012

In 2010, NDSS held its first Buddy Walk® on Washington, at which hundreds of people gathered to advocate for annual legislative and policy priorities that span the life experience of individuals with Down syndrome from birth through adulthood and range in issue from healthcare to asset development.

In 2012, the NDSS DS-Ambassador™ program was created. DS-Ambassadors are volunteer advocates of all abilities committed to taking part in the democratic process and serving as liaisons between NDSS and their Congressional Delegations. The goal of the DS-Ambassador program is to build long-lasting relationships with US Congress people to continually raise awareness, educate and advocate for public policy solutions that benefit the Down syndrome community at the federal level.

2013-2014

In December 2014, NDSS’ number one legislative priority became the law of the land. The Achieving a Better Life Experience (ABLE) Act was passed in Congress and the President signed it into law on December 19, 2014. The ABLE Act will help people with Down syndrome live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. As of March, 2016, 36 states have passed state ABLE bills.

2015-Present

In 2016, #DSVOTES™, an initiative from the NDSS Self-Advocate Advisory Board (SAAB) is launched to encourage political participation by all self-advocates.

In 2017, NDSS launched the End #LawSyndrome campaign, addressing a series of antiquated laws that impede the pursuit of a career or living independently without risking Medicaid benefits for individual with Down syndrome.