Down Syndrome Affiliates in Action Leaders from Across the Nation Bring a Unified Message to Capitol Hill

Washington, DC, February 23, 2009 --( The Down Syndrome Affiliates in Action (DSAIA) conference will be convening this week from Wednesday, February 25 to Saturday, February 28 in Washington DC for the third annual gathering of Down syndrome leaders from across the nation. Approximately 300 leaders from 85 Down syndrome organizations will be meeting with legislators to advocate for programs and legislation vital to the estimated 400,000 Americans with Down syndrome, their families, and the professionals who support them.

On February 26, conference participants will attend a Congressional reception at Capitol Hill from 8:30-9:30am at the Rayburn building which will honor the members of the Congressional Down syndrome caucus (CDSC), including the founding co-chairs Pete Sessions, Cathy McMorris Rodgers, Patrick Kennedy, and Eleanor Holmes Norton. The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus plans to support legislative activities that improve Down syndrome research, education and treatment and to promote public policies that enhance the quality of life for those with Down syndrome

The reception will be followed by an anticipated 150 meetings during Advocacy Day where Down syndrome leaders from 34 states will meet with legislators to discuss top priorities, including the following:

• Improving outcomes in education by funding the Higher Education Opportunity Act that gives people with intellectual disabilities access to post-secondary opportunities
• Eliminating barriers to independence and economic self-sufficiency in employment and community living for people with disabilities
• Promoting NIH research that accelerates the development of effective treatments and therapies.
• Providing more supportive services for families by funding the Kennedy-Brownback Prenatally and Postnatally Diagnosed Awareness Act.
• Developing a national Down syndrome patient registry for adequate studies

In their welcome letter to DSAIA conference attendees the CDSC co-chairs state, “The Affiliates in Action Conference is a wonderful opportunity for you to make a difference by meeting with your elected representatives, letting them know about the programs and people in your communities, and sharing your knowledge and perspectives on legislation and government programs impacting people with Down syndrome.”

Amy Allison, DSAIA organizer and Executive Director of the Down Syndrome Guild of Kansas City, says "In the history of the Down syndrome movement, we have never been to DC in this organized fashion, and we are pleased with the response and level of enthusiasm from the grass roots level."

Madeleine Will, Director of the National Down Syndrome Society Policy Center, says, “I am impressed by the commitment to legislative and policy concerns that affiliates are demonstrating by coming to Washington. It is clear that members of the Down syndrome community understand the critical role of government in helping to implement the vision we have for people with Down syndrome.”

The remaining two days of the conference will include conference breakout sessions focusing on issues of vital importance to Down syndrome community leaders, including prenatal genetic testing, education initiatives, adult support programs, community outreach, and non-profit management.

For more information about Down Syndrome Affiliates in Action (DSAIA) Advocacy Day visits or the legislative priorities being advanced, please contact Amy Allison at 913-384-4848 or You can also learn more by visiting

Affiliates in Action—Informed Decision Making Task Force
Amy Allison