National Down Syndrome Society Founded 1979
Carson Goodwin was born to Barton and Betsy Goodwin in 1978. Upon learning she had Down syndrome, the Goodwins dedicated themselves to gathering as much information as possible and creating opportunities for Carson to grow and learn like any other child. They soon discovered that support and resources available to parents of a child with Down syndrome were very limited. Betsy began collaborating with her close friend, Arden Moulton, and in 1979 the National Down Syndrome Society (NDSS) gained official nonprofit status.
- 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.
- NDSS awarded annual research grants, through its Science Scholar Award Program, to promising post-doctoral scientists who demonstrated extraordinary skill and achievement in seeking a better understanding of Down syndrome. This program became the Charles J. Epstein Down Syndrome Research Award. Studies funded through the award throughout the years investigated causes of Down syndrome, cognitive functioning, the connection between Down syndrome and Alzheimer's disease, obesity and leukemia.
- NDSS hosted its first scientific symposium entitled, The Molecular Structure of the 21st Chromosome and Down Syndrome. This was the first of 14 scientific symposia hosted by NDSS.
- NDSS launched Project Mainstream, which was funded by Honeywell, in which twelve kindergarten students with Down syndrome were selected from four school districts to spend part of each day in a typical classroom. Project Mainstream served as a model for parent support groups across the country to promote inclusion.
- NDSS and the Fresh Air Fund in New York City began Project Child. In this program, an inner city child with Down syndrome between the ages of six and 12 spent one weekend every six weeks with a host family outside New York City. Project Child was recognized by the White House with a Points of Light Award.
- Action, a federal agency, awarded NDSS a grant to expand Project Child. By working with parent support groups in Florida, California, and New York, NDSS was able to successfully replicate and expand the program nationally. This collaboration was the start of partnerships that would become the NDSS Affiliate Network.
- NDSS launched News & Views, a magazine written for and by people with Down syndrome. Actor and Self-Advocate Chris Burke became the NDSS Goodwill Ambassador and served as editor of the magazine.
- 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 launched the Educational Challenges Program, which was the first national survey of inclusion for children with Down syndrome.
- NDSS, the National Institute for Child Health & Human Development (NICHD) and National Institute for Neurological Disorders and Stroke (NINDS) launched a $3.9 million partnership to further Down syndrome research, particularly in the areas of cognition and behavior. At the time this represented the most funding ever earmarked for Down syndrome research. Six grants were awarded to fund research in these areas into development and related treatment for children and adults with Down syndrome.
- 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.
- The Ticket to Work and Work Incentives Improvement Act was passed, designed to help people who are receiving disability benefits from Social Security find good jobs, careers and self-supporting futures. The Act was bolstered by intense lobbying by the NDSS policy team and a grassroots write-in campaign by NDSS Affiliates and members. This legislation helped to lay the foundation for competitive employment for people with disabilities.
- Many NDSS researchers contributed to the map of chromosome 21, which was the first to be mapped as part of the Human Genome Project due to the relatively low number of genes on the chromosome.
- 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.
- NDSS created Changing Lives: Down Syndrome and the Health Care Professional, which aimed to educate physicians, nurses, genetic counselors and other health care professionals on the clinical and developmental needs of people with Down syndrome.
- NDSS launched Everyone Counts: Teaching Acceptance and Inclusion, a curriculum for grades K-6 that encourages positive relationships between students with and without disabilities.
- The Buddy Walk® was ranked in the top 30 fundraising events nationwide for money raised, revenue increase and best series event.
- Through a generous grant from the Riggio Family in 2005, NDSS provided three-year grants to two colleges in New Jersey to develop model postsecondary programs for students with intellectual disabilities. Over time, NDSS has provided technical assistance to emerging postsecondary programs across the country. Today there are over 250 two and four-year colleges and universities providing postsecondary education opportunities for students with intellectual disabilities. (See thinkcollege.net for a comprehensive list.)
- 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 2008, NDSS spearheaded the effort to help pass the Prenatally and Postnatally Diagnosed Conditions Awareness Act (Kennedy-Brownback legislation; Public Law 110-374). The law seeks to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options. NDSS is carryinh out the spirit and intent of this law by helping to facilitate the passage of Down syndrome information bills at the state level.
- In May 2008, the Congressional Down Syndrome Caucus (CDSC) was formed under the leadership of Congresswoman Cathy McMorris Rodgers (R-WA). The purpose of the CDSC is to educate members of Congress and their staff about Down syndrome. NDSS works the CDSC to support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome. In 2015, the CDSC expanded to a bipartisan, bicameral Congressional Task Force on Down Syndrome.
- 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. The new NDSS strategic direction included a new licensing agreement that commits Buddy Walk® groups to a 7% contribution that supports the NDSS National Policy Center in Washington, DC.
- NDSS unveiled its public awareness campaign, My Great Story, which honors and celebrates people with Down syndrome by showcasing stories written by and about them in a unique online storybook.
- In 2010, NDSS held its first Buddy Walk® on Washington, at which hundreds of people gathered in Washington, DC 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. NDSS continues to run this successful annual event.
- In September 2011, the National Institutes of Health (NIH) established an NIH Down Syndrome Consortium. The purpose of the Consortium is to foster the exchange of information on biomedical and biobehavioral research on Down syndrome being conducted by NIH institutes and centers working on Down syndrome-related topics and the national Down syndrome community. NDSS is represented on the Consortium.
- 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 overarching goal of the DS-Ambassador program is to build long-lasting relationships with US Senators and US Representatives to continually raise awareness, educate and advocate for public policy solutions that benefit the Down syndrome community at the federal level.
- In 2014, NDSS became a part of DS-Connect™: The Down Syndrome Registry, the new Down syndrome registry hosted by the National Institutes of Health (NIH) and the Down Syndrome Consortium. The goals of DS-Connect are to gain a better understanding of Down syndrome, to learn more about the health issues associated with Down syndrome, to develop new treatments for Down syndrome and to improve care for people with Down syndrome.
- 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.