Over the past two months, the Lettercase National Center for Prenatal and Postnatal Resources has provided training, support, and resources to 24 local Down syndrome organizations across the US to assist them in strengthening relationships with local medical providers and improving the diagnosis experience for expectant parents. Each organization has received over 5 hours of training; free nationally recommended materials for expectant parents and providers; and ongoing support and technical assistance. 

Half of those organizations also received scholarships funded by The Administration for Community Living and the Down Syndrome Diagnosis Network to continue receiving free materials, training, and support for the next two years. These organizations are also participating in a University of Kentucky study to determine the impact of medical outreach efforts by advocacy organizations on the diagnosis experiences of families and provider knowledge about genetic conditions

“Over the past 10 years, we have seen tremendous growth in the number of high quality, nationally-recommended resources about Down syndrome and other genetic conditions, as well as organizations to support new and expectant parents online and in-person. We have also seen significant growth in prenatal testing technologies. However, a recent study from the University of South Carolina showed that about half of women said they did not receive the support and information they needed when a diagnosis of Down syndrome was suspected.” (Wilkes, 2020)

One key challenge seems to be that many clinicians and expectant parents aren’t aware of these valuable resources available to them at the moment of diagnosis. Expectant parents also continue to indicate that they want to know about both the medical issues and also the life outcomes and supports and services available to people with Down syndrome and their families. The goal with this initiative is to strengthen relationships between the medical and advocacy community so that expectant parents receive the full spectrum of support and information they need following a diagnosis.”

Stephanie Meredith, Director of the Lettercase National Center for Prenatal and Postnatal Resources

Organizations receiving scholarships funded through a cooperative grant from The Administration for Community Living as part of the Center for Dignity in Healthcare for People with Disabilities:

  • 21 Connect (Buffalo, NY)
  • Down Syndrome Association of Central New Jersey 
  • Green River Area Down Syndrome Association (Kentucky)
  • Down Syndrome Association of Houston
  • Down Syndrome Association of Greater Cincinnati
  • Down Syndrome Association of Middle Tennessee (Nashville, TN)

Organizations receiving scholarships through generous funding by the Down Syndrome Diagnosis Network:

  • The Montgomery County Down Syndrome Interest Group of Pennsylvania
  • Down Syndrome Connection of Northwest Arkansas
  • Down Syndrome Association of Brevard (Florida)
  • Down Syndrome Connection of the North West (Idaho, Washington, and Wyoming)
  • Down Syndrome Network of West Virginia

“Our DSDN team is thrilled to be able to support the efforts of local Down syndrome organizations as they work to connect and guide medical providers to accurate, current information about Down syndrome. Through this project, we hope that more parents will find the information and support they seek out when receiving a new diagnosis.” 

Jen Jacob, Executive Director of the Down Syndrome Diagnosis Network

Each scholarship recipient receives training via learning modules, webinars, and support calls and comprehensive ongoing support including customized medical outreach plans, ongoing webinars, and connections with medical mentors in their local area. In addition, each organization received free nationally-recommended resources supported by the Joseph P. Kennedy, Jr. Foundation. Further, all the scholarship organizations are participating in a University of Kentucky study to determine the impact of medical outreach efforts by advocacy organizations on the diagnosis experiences of families and provider knowledge about genetic conditions

“GRADSA is very honored as a recipient for the prenatal medical outreach grant.  We are excited about having access to the training and resources for the next 2 1/2 years. The direct guidance is very helpful in developing a strong medical outreach plan. We look forward to building our relationship with medical providers by using the resources and training provided from Lettercase. We also look forward to providing those materials to new and expectant parents with the goal of making a Down syndrome diagnosis a positive experience.”   

Christi Ashby, Medical Outreach Coordinator at the Green River Area Down Syndrome Association in Kentucky, Scholarship recipient

The Lettercase National Center for Prenatal and Postnatal Resources is a program at the University of Kentucky’s Human Development Institute. If you are part of an organization that would also like to receive training, please visit: https://www.lettercase.org/education/advocacy-organizations/

If you are a medical provider who would like to serve as a mentor to one of these organizations or have a media inquiry, please contact Stephanie Meredith at stephanie.meredith@uky.edu.

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