The Lettercase National Center for Prenatal and Postnatal Resources offers accurate, up-to-date, balanced, and medically-reviewed information about multiple genetic conditions in multiple languages. Further, we provide training to build relationships between the medical and disability advocacy communities, and we offer presentations and publications about prenatal issues and the importance of education about prenatally-diagnosed conditions.
The National Center was founded in 2012 as part of the University of Kentucky’s Human Development Institute, a University Center for Excellence in Developmental Disabilities, and moved to the Genetic Support Foundation on October 1, 2024. The National Center is the umbrella organization for the following programs:
Lettercase—a program founded in 2008 that provides prenatal resources and training about prenatal screening and multiple disabilities for patients first learning about a diagnosis.
Down Syndrome Pregnancy—founded in 2010 by Nancy Iannone, Melissa Skavlem, Stephanie Meredith, Amy Geoffrey, Sarah Hartway, Heather Trammell, Lisa Lilienthal, and Kelle Hampton to provide resources and articles for new and expectant parents learning about a diagnosis of Down syndrome.
In 2009, our first booklet, “Understanding a Down Syndrome Diagnosis” 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. That version was prepared with assistance from representatives of the national medical and Down syndrome advocacy organizations:
All of our Lettercase resources are currently reviewed by a Prenatal Conditions Consensus Group that includes representatives of the following:
- The American Academy of Pediatrics (AAP)
- 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 Association of University Centers on Disabilities (AUCD)
- Representative disability advocacy groups, including the the 11q Research and Resource Group, the Down Syndrome Diagnosis Network, Down Syndrome Education International, the Foundation for Prader-Willi Research, the National Down syndrome Society, the Turner Syndrome Society of the US, AXYS, Spina Bifida Association, and more.
Because of the rigorous level of review, our materials have been included in the ACOG, NSGC, and ACMG professional guidelines. Furthermore, we have expanded our library of materials since 2015, with support from the Joseph P. Kennedy, Jr. Foundation, to include resources about Turner syndrome, Jacobsen syndrome, Prader-Willi syndrome, Spina Bifida, and Klinefelter syndrome. We add more materials that are reviewed by the Genetic Conditions Consensus Group in more languages as we have funding to create more resources.