Webinar Objectives:

This webinar is one of a series of webinars developed by LEND and UCEDD programs within the Southeast Regional Consortium.  The objectives of this webinar were:

1.  Understand the current landscape of prenatal testing.
2. Learn about the purpose of the National Center for Prenatal and Postnatal Down Syndrome Resources and what scientifically accurate, up-to-date, and balanced materials the National Center provides for new and expectant parents. Specifically discuss the ACMG and NSGC guidelines.
3. Learn how to address the needs of diverse populations undergoing prenatal testing, including different cultures.
4. Review how LEND programs in other areas of the country are using National Center materials to serve their populations. 

Webinar Description:

The University of Kentucky's Human Development Institute (HDI) has created a National Center for Prenatal and Postnatal Down Syndrome Resources that oversees three programs that complement each other in providing important resources and information for new and expectant parents learning about a diagnosis of Down syndrome. These programs include the Lettercase program, Brighter Tomorrows, and Down Syndrome Pregnancy. The Center provides this clearinghouse of nationally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, current and balanced information about Down syndrome. The activities of the Center include the dissemination of free resources to medical providers and their patients, the development of new materials, and national medical outreach through presentations at medical conferences and journals.

Speakers:

Dr. Harold L. Kleinert is currently the Executive Director of the Human Development Institute - University Center for Excellence in Developmental Disabilities, and Professor, Department of Rehabilitation Sciences, College of Health Sciences, University of Kentucky. He has directed a broad range of federally funded demonstration and research projects, especially in the area of education of children and youth with severe disabilities, including research focused on alternate assessment, peer tutoring, and service learning for students with developmental disabilities.  He has also led projects designed to teach physicians, as well as medical, dental, nursing, and physician assistant students, how to provide high quality care to patients with developmental disabilities.  He served as Principal Investigator for Brighter Tomorrows - created to teach resident physicians how to deliver a prenatal or newborn diagnosis of Down syndrome with supportive, balanced and accurate information.  Since June 2012, Dr. Kleinert has worked with Stephanie Meredith on the National Center for Prenatal and Postnatal Down Syndrome Resources, administered through the KY UCEDD.

Stephanie Meredith, M.A., is the Lettercase Program/Medical Outreach Director for HDI. She is also the author of the nationally recommended resource, "Understanding a Down Syndrome Diagnosis" and has overseen the distribution of nearly 40,000 copies of that booklet, and she also wrote the "Delivering a Down Syndrome Diagnosis" and "Understanding Prenatal Screening and Testing for Chromosome Conditions" pamphlets. Further, she co-authored "Diagnosis to Delivery: A Pregnant Mother's Guide to DS" distributed to over 2,500 expectant parents and medical professionals nationwide and is the co-creator of downsyndromepregnancy.org, a blog for expectant parents. In addition, she has provided international support to new parents of babies with Down syndrome by supervising the translation of resources into Russian and providing presentations to medical professionals in Russia as part of the State Department US Speakers program. Stephanie has also developed the Down Syndrome Prenatal Outreach Program and has spoken at national and international conferences, including ACMG, NBDPN, DSAIA, and local Down syndrome conferences.