National Down Syndrome Congress
AbbreviationNDSC
Formation1973[1]
PurposeEducational, advocate, legal, research[2]
HeadquartersRoswell, Georgia, USA United States[3]
Official language
English, Espanol
President
Dr. Kishore Vellody [1]
WebsiteNDSC Official Website

The National Down Syndrome Congress (NDSC) is a national not-for-profit organization that provides individuals, families, and health care providers information [4] and support [5] about Down syndrome, as well as advocating with and on behalf of individuals with Down syndrome.[6]

The NDSC provides free, up-to-date information concerning all aspects of life with Down syndrome. The organization also maintains a public policy and legislative advocacy team in Washington, D.C.

History

The NDSC was an outgrowth of meetings held by the Arc of the United States, and the NDSC was officially formed in 1973. It was the first organization to focus specifically on the needs of individuals with Down syndrome, rather than generalized intellectual or cognitive disabilities. Though originally based in Illinois, the national headquarters is now in Atlanta, Georgia.

In 2020, Shauntel Neal-Howe, of Spring, Texas was elected president of the organization. Since 2003, David Tolleson has served as executive director.[1]

Past Presidents
Tenure Name Home
1973-1976Pete StarrOwings Mills, Maryland
1976-1977Dr. Sig PueschelEast Greenwich, Rhode Island
1977-1978Robert GlasgowWashington, DC
1978-1979Lucille MsallOak Park, Illinois
1979-1982Diane CrutcherNormal, Illinois
1982-1985Tom O'NeillFt. Wayne, Indiana
1985-1988Frank MurphyAtlanta, Georgia
1988-1990Kathleen MarafinoSt. Louis, Missouri
1990-1993Michal ClarkBakersfield, California
1993-1996Maureen BabulaPhillipsburg, New Jersey
1996-2000Betty HerseyDallas, Texas
2000-2001Jo Ann SimonsSwampscott, Massachusetts
2001-2002Kathleen MarafinoCicero, New York
2002-2005Judy MartzLittleton, Colorado
2005-2008Rich RobisonSudbury, Massachusetts
2008-2011Brooks RobinsonPittsburgh, Pennsylvania
2011-2014James FaberMonument, Colorado
2014-2017Dr. Marilyn TolbertFort Worth, Texas
2017-2020Dr. Kishore VellodyPittsburgh, Pennsylvania
2020-Shauntel Neal-HoweSpring, Texas

Convention

Each year, the NDSC hosts the world's largest convention for individuals with Down syndrome and their families. The 2020 convention was changed to a virtual format due to the COVID-19 pandemic. The 2021 convention will be held will be held July 8–11 in Phoenix, Arizona. The convention has four main components—the General Convention, for parents and other family members, as well as professionals who work in the disability field; the Youth & Adults Conference, for teens and adults with Down syndrome; the Brothers & Sisters Conference, for school-age siblings; and, Kids' Camp, for children with and without Down syndrome. The Down Syndrome Medical Interest Group—USA usually holds its annual symposium in conjunction with the NDSC Convention.

The convention brings in world-renowned researchers and experts on Down syndrome and education to speak to parents about a variety of issues across the lifespan from infant nutrition and early childhood education through high school transitions and job placement through aging and nutrition issues. Learning tracks have included sessions for adult siblings as well as for families with a member who has a co-occurring diagnosis of Down syndrome and an autism spectrum disorder. In recent years, convention attendance has been around 4,000, with attendees coming from most U.S. states, and multiple nations.

Throughout its history, the NDSC Annual Convention has moved around the United States.

Convention Locations
Year City
1973Anaheim, California
1974Washington, DC
1975Las Vegas, Nevada
1976Indianapolis, Indiana
1977New Orleans, Louisiana
1978Boston, Massachusetts
1979Atlanta, Georgia
1980St. Louis, Missouri
1981Portland, Oregon
1982Chicago, Illinois
1983Providence, Rhode Island
1984San Antonio, Texas
1985Anaheim, California
1986Wichita, Kansas
1987Washington, DC
1988Cincinnati, Ohio
1989Denver, Colorado
1990Memphis, Tennessee
1991Boston, Massachusetts
1992Atlanta, Georgia
1993Anaheim, California
1994Minneapolis, Minnesota
1995Washington, DC
1996Miami Beach, Florida
1997Phoenix, Arizona
1998Dallas, Texas
1999Pittsburgh, Pennsylvania
2000Washington, DC
2001Cancelled due to the September 11 attacks.[1]
2002Denver, Colorado
2003Philadelphia, Pennsylvania
2004Minneapolis, Minnesota
2005Anaheim, California
2006Atlanta, Georgia
2007Kansas City, Missouri
2008Boston, Massachusetts
2009Sacramento, California
2010Orlando, Florida
2011San Antonio, Texas
2012Washington, DC
2013Denver, Colorado
2014Indianapolis, Indiana
2015Phoenix, Arizona
2016Orlando, Florida
2017Sacramento, California
2018Dallas, Texas
2019Pittsburgh, Pennsylvania
2020Convention From Your Couch
2021Brand New Day
2022New Orleans, Louisiana
2023Orlando, Florida

References

  1. 1 2 3 4 "History | National Down Syndrome Congress". Archived from the original on 2011-08-17. Retrieved 2011-02-24.
  2. "Mission and Vision | National Down Syndrome Congress". www.ndsccenter.org. Archived from the original on 9 March 2010. Retrieved 17 January 2022.
  3. "Contact Us | National Down Syndrome Congress". www.ndsccenter.org. Archived from the original on 9 March 2010. Retrieved 17 January 2022.
  4. Capone, G. (2009), Special needs: Realizing Potential Delving a Diagnosis of Down Syndrome, "Pediatric News," (19), 43, No, 1.
  5. Stray-Gundersen, K (1995). "Babies with Down Syndrome: A New Parents' Guide." Woodbine House
  6. Reilly, P. R.(2009). Commentary: The federal 'Prenatally and Postnatally Diagnosed Conditions Awareness Act’. "Prenatal Diagnosis." 29,9, 829-832

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