'Understanding a Down Syndrome Diagnosis' Booklet Available Through Kennedy Foundation and Kentucky's Human Development Institute

September 18, 2012

Website Link  http://www.lettercase.org/get-the-booklet/

Copyright to the nationally lauded, "Understanding a Down Syndrome Diagnosis" booklet has been donated to the The Joseph P. Kennedy, Jr. Foundation. The booklet will continue to be available in print and as a free digital download through the Lettercase program at the University of Kentucky's Human Development Institute (HDI).

Kennedy Foundation Executive Director Steve Eidelman, says, "As prenatal testing becomes more advanced, it is vital for expectant parents to have access to the most accurate, up-to-date and balanced information about the condition for which they are being tested. This is why the Kennedy Foundation originally supported 'Understanding a Down Syndrome Diagnosis,' which was particularly meaningful to the late Eunice Kennedy Shriver, and we look forward to growing this program along with HDI."

Dr. Harold Kleinert, Executive Director of HDI, adds, "'Understanding a Down Syndrome Diagnosis' is a perfect complement to our existing Brighter Tomorrows program, which is a recently updated website for new and expectant parents learning about Down syndrome. So we are delighted to be combining these resources to provide even more comprehensive support to families learning about a diagnosis of Down syndrome."

The Kennedy Foundation and HDI plan to expand the reach of these prenatal resources by presenting information at and attending medical conferences, participating in targeted distributions, offering translated versions, and creating additional materials, but can only do that with ongoing funding. Please consider donating today to support this important resource for expectant parents learning about Down syndrome.


Over 25,000 copies of Understanding a Down Syndrome Diagnosis have been distributed nationwide since 2008.

In 2009, the booklet was selected by the prestigious Joseph P. Kennedy Jr. Foundation First Call committee as the gold standard for prenatal information about Down syndrome.

Subsequently, Understanding a Down Syndrome Diagnosis was evaluated in 2010 by the Down Syndrome Consensus Group, initiated by the University of South Carolina's Genetic Counseling Program and Center for Disability Resources, to promote shared understanding of health professional and advocacy community perspectives on Down syndrome. The current version was prepared with assistance from representatives of the following:

  • The American Congress of Obstetricians and Gynecologists (ACOG)
  • The American College of Medical Genetics and Genomics (ACMG)
  • The National Society of Genetic Counselors (NSGC)
  • The National Down Syndrome Congress (NDSC)
  • The National Down Syndrome Society (NDSS)

According to Janice Edwards, Clinical Professor and Director of USC's Genetic Counseling Program, "This was a significant collaborative process with representatives of five national organizations contributing expert input to finish the booklet with accurate, balanced information and resources for parents with a prenatal diagnosis of Down syndrome."