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.


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.

Year President
2014-present Marilyn Tolbert; Fort Worth, TX
2011-2014 Jim Faber; Monument, CO
2008-2011 Brooks Robinson; Pittsburgh, PA
2005-2008 Rich Robison; Sudbury, MA
2002-2005 Judy Martz; Littleton, CO
2001-2002 Kathleen Marafino; Cicero, NY
2000-2001 Jo Ann Simons; Swampscott, MA
1996-1999 Betty Hersey; Dallas, Texas
1993-1996 Maureen Babula; Phillipsburg, NJ
1990-1993 Michael Clark, PhD, Bakersfield, CA
1988-1990 Kathleen Marafino, JD; St. Louis, MO
1985-1988 Frank J. Murphy; Atlanta, GA
1982-1985 Tom O’Neill; Ft Wayne, IN
1979-1982 Diane Crutcher; Normal, IL
1978-1979 Lucille Msall; Oak Park, IL
1977-1978 Col. Robert Glasgow; Washington, DC
1976-1977 Sig Pueschel, MD; Greenwich, RI
1973-1976 Pete Starr, Ph.D.; Owings Mills, MD


Down Syndrome News is published four 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.

The NDSC Governmental Affairs Newsline is sent via email 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.


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
2015 Phoenix, AZ “Beyond All Limits”
2014 Indianapolis, IN “Setting the Pace”
2013 Denver, CO “Taking Our Convention a Mile High”
2012 Washington, DC “A Monumental Meeting”
2011 San Antonio, TX “Deep In The Heart”
2010 Orlando, FL “Magic Moments”
2009 Sacramento, CA “Golden Dreams”
2008 Boston, MA “We’re More Alike Than Different”
2007 Kansas City, MO “Show Me the Possibilities”
2006 Atlanta, GA “Open Possibilities”
2005 Anaheim, CA “Golden Opportunities”
2004 Minneapolis, MN “Boundless Horizons”
2003 Philadelphia, PA “Families, Friends, Freedom”
2002 Denver, CO “Set Your Sights A Mile High”
2001 Cancelled due to 9/11
2000 Washington, DC “Celebrating Rights, Liberty and Justice for ALL People”
1999 Pittsburgh, PA “Bridges to Dreams”
1998 Dallas, TX “Trail Blazin..Creating New Frontiers”
1997 Phoenix, AZ “Creating the Vision for the Next Twenty Five Years”
1996 Miami Beach, FL “Bridges to A Bright Future”
1995 Washington, DC “Together We Can Make A Difference”
1994 Minneapolis, MN “Join Together..Make the Vision A Reality”
1993 Anaheim, CA “Follow the Dream…Catch the Vision”
1992 Atlanta, GA “See the Potential”
1991 Boston, MA “Continuing the Revolution”
1990 Memphis, TN “Toward Independence”
1989 Denver, CO “Set Your Sights A Mile High”
1988 Cincinnati, OH “In the Mainstream”
1987 Washington, DC “A Capital Event”
1986 Wichita, KS “Follow the Yellow Brick Road”
1985 Anaheim, CA “Coming Home”
1984 San Antonio, TX
1983 Providence, RI
1982 Chicago, IL “The Challenges of Down Syndrome”
1981 Portland, OR “Rising Expectations”
1980 St. Louis, MO “The Eighties…A New Decade”
1979 Atlanta, GA “Focus on Progress”
1978 Boston, MA “Down Syndrome…It’s Time to Understand”
1977 New Orleans, LA “Speaking Up for Down’s, Parent-Professional Communication”
1976 Indianapolis, IN “Future for Down’s Syndrome”
1975 Las Vegas, NV “Down’s Syndrome Today…Vital Issues”
1974 Washington, DC
1973 Anaheim, CA “Down’s Syndrome: Research, Prevention and Treatment”

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 most recent international meeting was held in Ireland in 2009.