AAP Recommends University of Kentucky HDI Resources for Families of Infants with Down Syndrome
In a clinical report released April 18, the American Academy of Pediatrics recommended the resources administered by the University of Kentucky’s Human Development Institute (HDI) to pediatricians nationwide. It is recommended that these resources be distributed by pediatricians to families learning about a prenatal diagnosis of Down syndrome.
The report directs medical providers to Lettercase: National Prenatal and Postnatal Resource Center, which has been housed within HDI since 2012. Lettercase offers print and digital resources that provide accurate, balanced, and up-to-date information for new parents and parents. future parents who are learning. on a diagnosis of Down syndrome and other genetic diseases.
The guidelines in this report are truly the definitive recommendations for pediatricians. So to be included in that, especially when there’s only a handful of resources listed…it’s just a real honor.”
Stephanie Meredith, Director of Lettercase
The Lettercase book “Understanding a Down Syndrome Diagnosis” was originally developed in 2008 by Meredith and her husband, Justin. Former HDI Executive Director Harold Kleinert was the Principal Investigator of Brighter Tomorrows, a grant funded by the United States Centers for Disease Control’s cooperative agreement with the Association of University Centers on Disability (AUCD) to improve the ability of physicians to provide accurate information to families. diagnosis of Down syndrome in their child. Brighter Tomorrows, which is also listed in the American Academy of Pediatrics report as a resource for families, has now merged with Lettercase into one national center.
Meredith and Kleinert had a vision of the societal need they could begin to meet by pooling their resources. Generally, according to Meredith, grant-funded programs have a natural lifespan, as grants come with limited funding usually distributed over a set number of years; So while Brighter Tomorrows was launched with a two-year development grant and a one-year national outreach grant, Meredith and Kleinert found funding for Lettercase through book sales and various other sources of support. income.
“It was kind of this piecemeal program, but we made it flourish,” Meredith said. “It was a labor of love for (the Human Development Institute) and the Joseph P. Kennedy, Jr. Foundation to support this program, because it was definitely driven by a desire to meet a need for families, as opposed to for the sheer satisfaction of cutting the terms of a grant…we found a funding structure because we believed in the purpose of what we were doing.