Organization and Purpose
The National Down Syndrome Congress (NDSC) is a not-for-profit organization founded in 1973. The NDSC is governed by a twenty-two member Board of Directors composed of parents and family members of individuals with Down syndrome, self-advocates and other individuals involved with people with Down syndrome.
The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information dissemination on all aspects of Down syndrome. The NDSC is financially supported primarily through membership dues and individual contributions.
Origin
The National Down Syndrome Congress was formed in 1973 by group of people who had been meeting as a committee of the Association of Retarded Citizens, now known as the Arc. Out of this meeting came the decision to become a self-sufficient organization dealing specifically with Down syndrome which is now known as the National Down Syndrome Congress. The original committee members were: Dr. Karol Storm, William Bronston, M.D., Kay McGee, Richard Koch M.D., George Johnson, and Betty A. Green, M.D. The NDSC was incorporated in the state of Illinois and operated in Illinois until 1993 when the National Center was moved to Atlanta, GA.
The Presidents
NDSC board members are elected by the membership to a three (3) year term. Officers are elected to serve one-year terms.
1973-1976
Pete Starr, Ph.D.; Owings Mills, MD
1976-1977
Sig Pueschel, MD; Greenwich, RI
1977-1978
Col. Robert Glasgow; Washington, DC
1978-1979
Lucille Msall; Oak Park, IL
1979-1982
Diane Crutcher; Normal, IL
1982-1985
Tom O’Neill; Ft Wayne, IN
1985-1988
Frank J. Murphy; Atlanta, GA
1988-1990
Kathleen Marafino, JD; St. Louis, MO
1990-1993
Michael Clark, PhD, Bakersfield, CA
1993-1996
Maureen Babula; Phillipsburg, NJ
1996-1999
Betty Hersey; Dallas, Texas
2000-2001
Jo Ann Simons; Swampscott, MA
2001-2002
Kathleen Marafino; Cicero, NY
2002-2005
Judy Martz; Littleton, CO
2005-2008
Rich Robison; Sudbury, MA
2008- Current
Brooks Robison
PUBLICATIONS
Down Syndrome News is published six times per year and is a benefit of membership. It is written for parents and professionals alike and contains book reviews, articles, and a variety of items reflecting the wide spectrum of interests as well as the common concerns of our membership. Down Syndrome Headline News is a newsletter by and for people with Down syndrome. It highlights the accomplishments of people with Down syndrome and provides information of particular interest to people with Down syndrome.
The NDSC Newsline Governmental Affairs is electronically published bi-weekly and is available to any member requesting to receive it electronically. The Governmental Affairs Newsline is an update of activities at the federal level which effect people with Down syndrome.
Additional publications include a pamphlet, “Down Syndrome”, and informational literature in all areas pertinent to Down syndrome. Periodically, as issues warrant, “Alerts” are sent to our parent groups and other interested parties on topics ranging from education to medicine to legal or legislative issues.
Convention
The NDSC Annual Convention brings together scores of internationally known speakers, both professionals and parents, to address concerns of all people interested in Down syndrome. Traditionally this convention has been set up as plenary sessions addressing general topics with specific issues addressed in workshops. The NDSC Annual Convention has been held in the following locations:
| Year | City | Theme | |
| 1973 | Anaheim, CA | “Down’s Syndrome: Research, Prevention and Treatment” |
|
| 1974 | Washington, DC | ||
| 1975 | Las Vegas, NV | “Down’s Syndrome Today…Vital Issues” | |
| 1976 | Indianapolis, IN | “Future for Down’s Syndrome” | |
| 1977 | New Orleans, LA | “Speaking Up for Down’s, Parent-Professional Communication” |
|
| 1978 | Boston, MA | “Down Syndrome…It’s Time to Understand” | |
| 1979 | Atlanta, GA | “Focus on Progress” | |
| 1980 | St. Louis, MO | “The Eighties…A New Decade” | |
| 1981 | Portland, OR | “Rising Expectations” | |
| 1982 | Chicago, IL | “The Challenges of Down Syndrome” | |
| 1983 | Providence, RI | ||
| 1984 | San Antonio, TX | ||
| 1985 | Anaheim, CA | “Coming Home” | |
| 1986 | Wichita, KS | “Follow the Yellow Brick Road” | |
| 1987 | Washington, DC | “A Capital Event” | |
| 1988 | Cincinnati, OH | “In the Mainstream” | |
| 1989 | Denver, CO | “Set Your Sights A Mile High” | |
| 1990 | Memphis, TN | “Toward Independence” | |
| 1991 | Boston, MA | “Continuing the Revolution” | |
| 1992 | Atlanta, GA | “See the Potential” | |
| 1993 | Anaheim, CA | “Follow the Dream…Catch the Vision” | |
| 1994 | Minneapolis, MN | “Join Together..Make the Vision A Reality” | |
| 1995 | Washington, DC | “Together We Can Make A Difference” | |
| 1996 | Miami Beach, FL | “Bridges to A Bright Future” | |
| 1997 | Phoenix, AZ | “Creating the Vision for the Next Twenty Five Years” |
|
| 1998 | Dallas, TX | “Trail Blazin..Creating New Frontiers” | |
| 1999 | Pittsburgh, PA | “Bridges to Dreams” | |
| 2000 | Washington, DC | “Celebrating Rights, Liberty and Justice for ALL People” |
|
| 2001 | Cancelled due to 9/11 | ||
| 2002 | Denver, CO | “Set Your Sights A Mile High” | |
| 2003 | Philadelphia, PA | “Families, Friends, Freedom” | |
| 2004 | Minneapolis, MN | “Boundless Horizons” | |
| 2005 | Anaheim, CA | “Golden Opportunities” | |
| 2006 | Atlanta, GA | “Open Possibilities” | |
| 2007 | Kansas City, MO | “Show Me the Possibilities” | |
| 2008 | Boston, MA | “We’re More Alike Than Different” | |
| 2009 | Sacramento, CA | “Golden Dreams” | |
The NDSC has been involved in other special conferences over the years both nationally and internationally. The NDSC initiated the first international Down Syndrome Conference in 1981. Since that time international conferences have been held in Mexico, England, Israel, the United States, Spain, Australia, Singapore and Canada. The next international meeting will be held in Ireland in 2009.
