National Down Syndrome Society

NDSS History

NDSS has worked since 1979 to benefit people with Down syndrome and their families through national leadership in education, research, and advocacy. The following timeline highlights the major achievements and milestones in the organization's life.

1978

• Carson Goodwin, daughter of Barton and Betsy Goodwin, was born with Down syndrome. The Goodwins dedicated themselves to gathering as much information as possible about Down syndrome 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, on an idea to address those pressing needs.

1979

• Through the efforts of Betsy and Arden, the National Down Syndrome Society (NDSS) gained official nonprofit status and began its work in the areas of education, research, and advocacy.

1980

• NDSS published its first brochure, This Baby Needs You Even More, for new parents.

• In the spring, NDSS held a small scientific symposium with thirteen researchers from around the world. After three days of spirited discussion, participants expressed great excitement that Down syndrome might finally receive increased attention from the research community. During the meeting, NDSS established its primary research priorities as funding junior investigators interested in Down syndrome research and hosting scientific symposia on various topics related to Down syndrome.

• The NDSS Science Advisory Board was established, with Charles J. Epstein, M.D. serving as chair.

1981

• NDSS began its ongoing work to increase general public awareness and acceptance of Down syndrome.

• The Society initiated its first awareness campaign with a baseball-themed public service advertisement titled, "Give these kids a chance at bat" that appeared in several magazines, including Time. In addition, NDSS hosted World Series fundraisers in thirteen locations across the country.

• Based on the positive feedback NDSS received from this awareness campaign, the society worked to have October proclaimed "Down Syndrome Awareness Month," and this designation continues today.

1982

• NDSS launched a joint project with Allstate Foundation to produce Gifts of Love, a video for new parents of a child with Down syndrome. The video became the cornerstone of the NDSS parent support package.

1983

• NDSS established the Science Scholar Award Program which provided grants to post-doctoral researchers who were studying Down syndrome. The first recipients were neurobiologist Pat Levitt, Ph.D. and embryologist Terry Hassold, Ph.D. Additional science scholars were funded each year through 2000, when the scope of the program expanded.

1984

• NDSS hosted its first scientific symposium entitled, The Molecular Structure of the 21st Chromosome and Down Syndrome. The proceedings were published by the Academy of Science in 1985. To date, fourteen scientific symposia and research conferences have been held; the proceedings of most of which have been published in various formats.

1985

• 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 6 and 12 spent one weekend every six weeks with a host family outside the city.

1986

• NDSS undertook Project Mainstream, which was funded by Honeywell. Twelve kindergarten students with Down syndrome were selected from four school districts to spend part of each day in a typical classroom. In each case, the typical and special education teachers were given extra training by specialists and were encouraged to work together. The children flourished and the teachers found the project to be successful. Project Mainstream served as a model for parent support groups across the country to promote inclusion.

1987

• An NDSS funded researcher, Rachael Neve, was the principal investigator to isolate a gene on the 21st chromosome that relates Down syndrome and Alzheimer's disease.

1988

• 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.

1989

• NDSS began to explore how new technology could be used for individuals with Down syndrome by hosting a meeting of doctors concerned with education, neurology, and technology in Tucson, AZ. The Society then conducted a one-year project in which ten children with Down syndrome and their parents and siblings visited a computer lab to learn basic computing skills. This program resulted in a series of manuals with tips and tactics for computer use by people with Down syndrome.

1990

• NDSS launched its Affiliate Network by developing relationships with parent support groups and other local organizations that work on behalf of people with Down syndrome and their families. Today, NDSS has more than 300 Affiliates both nationally and internationally.

• Project Child was recognized by the White House with a Points of Light award.

• NDSS held its first Professional Women's Luncheon, which honored Anna Quindlen and Barbara Bush, to raise funds for the Science Scholar Award Program. Every year since, NDSS has hosted a luncheon to recognize a woman who has shown a commitment to public service and volunteerism. In recent years, the luncheon has also honored recipients of the Voices Award, which celebrates the achievements of people with Down syndrome. The luncheon continues to support NDSS's programs.

1991

• NDSS held its first health care conference in San Diego, CA, co-chaired by Science Advisory Board members Ira T. Lott and Ernest McCoy. The conference resulted in the publication of the book, Down Syndrome: Advances in Medical Care.

1992

• Kemper National Insurance sponsored the production of a video for families called Opportunities to Grow. This 30-minute film addressed how to involve and include children and young adults with Down syndrome in their schools and communities.

1993

• NDSS held an international conference in Orlando, FL. Attendees included more than 800 parents, family members, and professionals from twelve countries. This was the first of many conferences that would bring together hundreds of people for networking, education, and celebration.

1994

• NDSS launched News & Views, a magazine for and by people with Down syndrome. Chris Burke became the NDSS Goodwill Ambassador and served as editor of the magazine.

• NDSS celebrated the 10th anniversary of its annual research symposia with a larger International Research Conference in Charleston, SC. Funded by NICHD and NINDS. The conference attracted 150 researchers. At that meeting, NDSS forged a formal relationship with the doctors and researchers that form the Down Syndrome Medical Interest Group. This group, co-chaired by William Cohen, M.D. and Bonnie Patterson, M.D., has become the backbone of the NDSS Clinical Advisory Board.

1995

• 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 more than 260 in 2005. The Buddy Walk® enables NDSS affiliates and other groups to advocate for individuals with Down syndrome in their community while also raising much needed funds for local and national programs.

• The Educational Challenges Program was initiated to study the public school experience for children with Down syndrome. This two-year study was the first national survey of inclusion for children with Down syndrome.

1996

• NDSS launched the Teaching Partnership Inclusion Program to increase students' understanding of Down syndrome and encourage positive relationships between people with and without disabilities. Posters dealing with the themes of friendship and inclusion were distributed to thousands of schools, libraries, and other organizations across the country.

1997

• NDSS organized the International Research Conference on Cognition and Behavior in Down Syndrome at Amelia Island, FL, which was instrumental in helping to set the stage and determine priorities for the groundbreaking partnership between NDSS and NIH in 1998.

1998

• NDSS, NICHD and NINDS launched a $3.9 million partnership to further Down syndrome research, particularly in the areas of cognition and behavior. This represents the most funding ever earmarked for Down syndrome research. NDSS contributed $600,000 to the initiative. Six grants were funded through the partnership.

1999

• NDSS hosted a three-day advocacy meeting in Washington, D.C. with the theme, Voices for Change: Advocacy for the 21st Century. Affiliate group leaders and self-advocates attending training sessions on effective advocacy and leadership and met with congressional representatives.

• The Ticket to Work and Work Incentives Improvement Act were passed, 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.

2000

• The Human Genome Project announced the completion of a working draft of the entire DNA sequence. Chromosome 21 was the first to be mapped due to the relatively low number of genes on the chromosome. Many NDSS researchers contributed to the Chromosome 21 map.

• Thanks to a $70,000 grant from the Enoch-Gelbard Foundation, NDSS started the Institute for Special Education Leadership in Florida. The concept was to train parents, self-advocates, and organizations to build a statewide network to better institute IDEA in schools.

2001

• Having achieved its goal of encouraging new scientists to enter the field of Down syndrome research, the Science Scholar Award program was restructured to provide one to three year grants of $5,000-$35,000 in basic, clinical, or applied research in Down syndrome. The program was renamed the Charles J. Epstein Down Syndrome Research Award Program to honor Charles J. Epstein, M.D., who served as chair of the NDSS Science Advisory Board from 1979-2000.

2002

• NDSS launched Changing Lives: Down Syndrome and the Health Care Professional, a model program to educate physicians, nurses, genetic counselors, and other health care professionals about the clinical and developmental needs of people with Down syndrome.

• John C. McGinley joined NDSS as National Buddy Walk® Spokesman and since then has continued to generate national visibility for NDSS. He has participated in countless PSA's to promote positive public awareness for people with Down syndrome and most recently became the NDSS Ambassador in the My Great Story campaign.

2003

NDSS co-sponsored an international research conference on cognition and behavior in Down syndrome with the Down Syndrome Research Foundation, which was attended by more than 100 researchers and world-renowned experts in their fields.

2004

• NDSS increased funding for the Charles J. Epstein Down Syndrome Research Award by 120% to over $170,000. Studies funded through the award continue to investigate causes of Down syndrome, cognitive functioning, the connection between Down syndrome and Alzheimer's disease, obesity in people with Down syndrome, and leukemia.

• NDSS established a National Policy Center in the Washington, D.C. area, under the leadership of Madeleine Will, to increase access to national policymakers and provide grassroots advocacy training.

2005

• NDSS launched Everyone Counts: Teaching Acceptance & Inclusion, a curriculum for grades K-6 that encourages positive relationships between students with and without disabilities.

• NDSS created a postsecondary education model program for students with intellectual disabilities and awarded grants to two higher education institutions in New Jersey to participate in the program.

2006

• Research Coalition meetings are organized by NDSS to outline research goals for both private and public funding.

2007

• NDSS co-sponsors a meeting with the Center for Disease Control, Setting a Public Health Research Agenda for Down Syndrome.

• NDSS was invited to participate in the NIH Working Group meeting held in July 2007, which brought together experts in the field of Down syndrome to discuss the needs in the various areas of research. As a result of these meetings, the NIH published a Down Syndrome Research Plan, which outlines short, medium and long-term priorities in DS research and is a huge step for the Down syndrome research community.

2008

• The Buddy Walk program welcomed its first regional and national partners: Regal Entertainment Group, Knology and the American Physical Therapy Association, Section on Pediatrics. Further, the Buddy Walk was ranked in the top 30 fundraising events nationwide for: money raised, revenue increase, and best series event.

2009

• NDSS announced a new mission and vision that incorporates a new strategic direction, a new logo, and a host of initiatives to support its commitment to being the national advocate for people with Down syndrome. The new strategic direction allows the organization to focus on key objectives that will grow the NDSS National Policy Center in DC, strengthen the national Buddy Walk program with its affiliates, appoint a new leader to support community relations, and launch a new national public awareness strategy. This strategy included a new licensing agreement that commits Buddy Walk groups to a 7% contribution that supports the NDSS National Policy Center in Washington D.C.

• NDSS held the first National Buddy Walk conference where Buddy Walk organizers were able to learn and share best practices.

• NDSS unveiled the new public awareness strategy, My Great Story, which honors and celebrates the great stories of the 400,000 Americans living with Down syndrome by showcasing these stories in a beautiful online storybook. Two of these stories were turned into a national public service announcements (PSA), featuring the great stories of Sujeet Desai, The Traveler and Sara Wolff, The Public Speaker. These PSA's are featured in national and local media outlets across the country.

2010

• On February 24th and 25th 2010, NDSS brought together almost 200 advocates for people with Down syndrome and their families (including many self-advocates) in Washington D.C. to send a strong message to elected officials about important national policy priorities.