National Down Syndrome Congress
|Purpose||Educational, advocate, legal, research|
|Headquarters||Roswell, Georgia, USA |
|Dr. Kishore Vellody |
|Website||NDSC Official Website|
The National Down Syndrome Congress (NDSC) is a national not-for-profit organization that provides individuals, families, and health care providers information  and support  about Down syndrome, as well as advocating with and on behalf of individuals with Down syndrome.
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..
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 2017, Dr. Kishore Vellody, of Pittsburgh, Pennsylvania was elected president of the organization. Past presidents are Pete Starr (1973–1976), Owings Mills, Maryland; Sig Pueschel(1976–1977), East Greenwich, Rhode Island; Robert Glasgow (1977–1978), Washington, DC; Lucille Msall (1978–1979), Oak Park, Illinois; Diane Crutcher (1979–1982), Normal, Illinois; Tom O'Neill (1982–1985), Ft. Wayne, Indiana; Frank Murphy (1985–1988), Atlanta, Georgia; Kathleen Marafino (1988–1990), St. Louis, Missouri; Michal Clark (1990–1993), Bakersfield, California; Maureen Babula (1993–1996), Phillipsburg, New Jersey; Betty Hersey (1996–1999), Dallas, Texas; Jo Ann Simons (2000–2001) Swampscott, Massachusetts; Kathleen Marafino (2001–2002) Cicero, New York; Judy Martz (2002–2005) Littleton, Colorado; Rich Robison (2005–2008) Sudbury, Massachusetts; Brooks Robinson (2008-2011) Pittsburgh, Pennsylvania, James Faber (2011-2014) Monument, Colorado, and, Dr. Marilyn Tolbert (2014-2017), Fort Worth, Texas. Since 2003, David Tolleson has served as Executive Director.
Each year, the NDSC hosts the world's largest convention for individuals with Down sydnrome and their families. The next convention will be held July 12-15, 2018 in Dallas, Texas. 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 Conventon.
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. Past meeting sites are Anaheim, California (1973), Washington, DC (1974), Las Vegas, Nevada (1975), Indianapolis, Indiana (1976), New Orleans, Louisiana (1977), Boston, Massachusetts (1978), Atlanta, Georgia (1979), St. Louis, Missouri (1980), Portland, Oregon (1981), Chicago, Illinois (1982), Providence, Rhode Island (1983), San Antonio, Texas (1984), Anaheim, California (1985), Wichita, Kansas (1986), Washington, DC (1987), Cincinnati, Ohio (1988), Denver, Colorado (1989), Memphis, Tennessee (1990), Boston, Massachusetts (1991), Atlanta, Georgia (1992), Anaheim, California (1993), Minneapolis, Minnesota (1994), Washington, DC (1995), Miami Beach, Florida (1996), Phoenix, Arizona (1997), Dallas, Texas (1998), Pittsburgh, Pennsylvania (1999), Washington, DC (2000), Denver, Colorado (2002), Philadelphia, Pennsylvania (2003), Minneapolis, Minnesota (2004), Anaheim, California (2005), Atlanta, Georgia (2006), Kansas City, Missouri (2007), Boston, Massachusetts (2008), Sacramento, California (2009), Orlando, Florida (2010), San Antonio, Texas (2011), Washington, DC (2012), Denver, Colorado (2013), Indianapolis, Indiana (2014), Phoenix, Arizona (2015), Orlando, Florida (2016), and, Sacramento, California (2017). The 2001 Convention was cancelled due to the September 11 attacks.
- Capone, G. (2009), Special needs: Realizing Potential Delving a Diagnosis of Down Syndrome, "Pediatric News," (19), 43, No, 1.
- Stray-Gundersen, K (1995). "Babies with Down Syndrome: A New Parents' Guide." Woodbine House
- Reilly, P. R.(2009). Commentary: The federal 'Prenatally and Postnatally Diagnosed Conditions Awareness Act’. "Prenatal Diagnosis." 29,9, 829-832