National Down Syndrome Society

The National Down Syndrome Society (NDSS) is an American organization that offers support to people with Down syndrome, their families, friends, teachers, and coworkers, and educates the general public about Down syndrome. The mission of the NDSS is to be the leading human rights organization for all individuals with Down syndrome.[1]

National Down Syndrome Society
AbbreviationNDSS
Formation1979
PurposeDisability Advocate
HeadquartersManhattan, New York City, New York, US
Official language
English, Spanish
President & CEO
Kandi Pickard
Budget
$2,000,000+
Websitewww.ndss.org

History

The NDSS was founded by Betsy Goodwin and Arden Moulton. Goodwin's daughter, Carson was born in 1978 with Down Syndrome.[2][3] The parents soon discovered that the support and resources available to parents with Down syndrome children were very limited. Goodwin and Arden created the NDSS, which gained official nonprofit status in 1979.[4] 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."[5]

Areas of programming

NDSS focuses on four items of programming to enhance the quality of life for those with Down syndrome.[6]

  • The National Policy Center creates systematic change through legislative policy.
  • The National Buddy Walk Program honors and celebrates individuals with Down syndrome in their communities.
  • The Public Awareness Initiatives bring new and positive presentations of Down syndrome to the public.
  • The Community Programs provide information and resources about Down syndrome.

Other Initiatives
  • NDSS holds an annual Times Square Video Presentation to highlight individuals with Down syndrome and promote acceptance and inclusion. Approximately 500 individuals from around the world are celebrated each year, in Times Square, during their hour-long video presentation.[7]
  • NDSS has garnered recognition for its "National Advocacy & Policy Center's" legislative agenda. NDSS' advocacy team has worded to pass legislation intended to help people with Down syndrome overcome stated challenges.[8] This includes a bill 2021 bill that was introduced called "Charlotte Woodward Organ Transplant Discrimination Prevention Act". The Act's intent is to prevent transplant discrimination at the State and Federal level, against people with Down Syndrome.[9]
  • NDSS collaborated with Mattel on their first Barbie doll with Down Syndrome in 2023.[10]

Public Webinar

In January 2019, the NDSS offered a free public webinar on facilitated communication held by Christine Ashby.[11] This communication method is based on the theory that many people that are unable to speak and are not cognitively impaired, but are simply unable to produce the sounds for speech. A helper or "facilitator" assists by guiding the non-speaking person's hand over a keyboard. Many masked independent tests and studies have suggested that the facilitator is actually the one doing the typing, and not the person with the disability. Stuart Vyse, reporting for Skeptical Inquirer, commented that "Given NDSS's mission of being 'The leading human rights organization for all individuals with Down syndrome,' it is not surprising the organization supports a communication method that [Christy] Ashby [PhD] described as a 'human right and a civil right.' Nonetheless, it is unfortunate that a leading Down syndrome advocacy group is promoting a belief system over evidence-based methods that work."[11]

Probability of conceiving a child with DS (maternal age)

Information provided by NDSS:

  • At age 20, 1 in 2000
  • At age 24, 1 in 1300
  • At age 25, 1 in 1200
  • At age 29, 1 in 950
  • At age 30, 1 in 900
  • At age 34, 1 in 450
  • At age 35, 1 in 350
  • At age 39, 1 in 150
  • At age 40, 1 in 100
  • At age 44, 1 in 40
  • At age 45, 1 in 30
  • At age 49, 1 in 10

Whose information can be found on their website.[12]

References
  1. "Mission & Vision". National Down Syndrome Society. Archived from the original on 2 February 2018. Retrieved 2017-01-11.
  2. Sara, Sally (2008-06-01). "For People With Down Syndrome, Longer Life Has Complications". The New York Times. ISSN 0362-4331. Retrieved 2020-04-19.
  3. Hennessey, David; Writer, Staff (2011-09-24). "State girl with Down syndrome to be featured in Times Square video". Connecticut Post. Retrieved 2020-04-19.
  4. "National Down Syndrome Society". GuideStar. Retrieved 2021-06-29.
  5. "Our Mission". National Down Syndrome Society. Retrieved 26 April 2023.
  6. "National Down Syndrome Society - Brochure" (PDF). 2016. Archived (PDF) from the original on 26 March 2020. Retrieved 26 April 2023.
  7. "Times Square Video Presentation". National Down Syndrome Society. Archived from the original on 30 March 2021.
  8. Holohan, Meghan (2 September 2020). "Woman details inequities of living with Down syndrome in popular TikTok video". Today. Archived from the original on 8 December 2022. Retrieved 26 April 2023.
  9. Norlian, Allison (4 January 2021). "A Woman with Down Syndrome Has Fought for Organ Transplant Anti-Discrimination Legislation for Years; Now, It's Been Proposed, and Named After Her". Forbes. Archived from the original on 26 April 2023. Retrieved 26 April 2023.
  10. Maslow, Nick (25 April 2023). "Barbie Debuts First Doll with Down Syndrome to 'Counter Social Stigma Through Play'". People Magazine. Retrieved 2023-04-26.
  11. Vyse, Stuart (16 January 2019). "National Down Syndrome Society Promotes Communication Pseudoscience". Skeptical Inquirer. Committee for the Scientific Investigation of Claims of the Paranormal. Archived from the original on 17 January 2019. Retrieved 17 January 2019.
  12. "What is Down Syndrome?". National Down Syndrome Society.
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