National Down Syndrome Congress

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]

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

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

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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
1973–1976 Pete Starr Owings Mills, Maryland
1976–1977 Dr. Sig Pueschel East Greenwich, Rhode Island
1977–1978 Robert Glasgow Washington, DC
1978–1979 Lucille Msall Oak Park, Illinois
1979–1982 Diane Crutcher Normal, Illinois
1982–1985 Tom O'Neill Ft. Wayne, Indiana
1985–1988 Frank Murphy Atlanta, Georgia
1988–1990 Kathleen Marafino St. Louis, Missouri
1990–1993 Michal Clark Bakersfield, California
1993–1996 Maureen Babula Phillipsburg, New Jersey
1996–2000 Betty Hersey Dallas, Texas
2000–2001 Jo Ann Simons Swampscott, Massachusetts
2001–2002 Kathleen Marafino Cicero, New York
2002–2005 Judy Martz Littleton, Colorado
2005–2008 Rich Robison Sudbury, Massachusetts
2008–2011 Brooks Robinson Pittsburgh, Pennsylvania
2011–2014 James Faber Monument, Colorado
2014–2017 Dr. Marilyn Tolbert Fort Worth, Texas
2017–2020 Dr. Kishore Vellody Pittsburgh, Pennsylvania
2020– Shauntel Neal-Howe Spring, Texas

Convention

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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[7]
Year City
1973 Anaheim, California
1974 Washington, DC
1975 Las Vegas, Nevada
1976 Indianapolis, Indiana
1977 New Orleans, Louisiana
1978 Boston, Massachusetts
1979 Atlanta, Georgia
1980 St. Louis, Missouri
1981 Portland, Oregon
1982 Chicago, Illinois
1983 Providence, Rhode Island
1984 San Antonio, Texas
1985 Anaheim, California
1986 Wichita, Kansas
1987 Washington, DC
1988 Cincinnati, Ohio
1989 Denver, Colorado
1990 Memphis, Tennessee
1991 Boston, Massachusetts
1992 Atlanta, Georgia
1993 Anaheim, California
1994 Minneapolis, Minnesota
1995 Washington, DC
1996 Miami Beach, Florida
1997 Phoenix, Arizona
1998 Dallas, Texas
1999 Pittsburgh, Pennsylvania
2000 Washington, DC
2001 Cancelled due to the September 11 attacks.[1]
2002 Denver, Colorado
2003 Philadelphia, Pennsylvania
2004 Minneapolis, Minnesota
2005 Anaheim, California
2006 Atlanta, Georgia
2007 Kansas City, Missouri
2008 Boston, Massachusetts
2009 Sacramento, California
2010 Orlando, Florida
2011 San Antonio, Texas
2012 Washington, DC
2013 Denver, Colorado
2014 Indianapolis, Indiana
2015 Phoenix, Arizona
2016 Orlando, Florida
2017 Sacramento, California
2018 Dallas, Texas
2019 Pittsburgh, Pennsylvania
2020 Convention From Your Couch
2021 Brand New Day
2022 New Orleans, Louisiana
2023 Orlando, Florida

References

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  1. ^ a b c d "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
  7. ^ "Convention History and Awards | National Down Syndrome Congress".