We talk a lot about how doctors deliver a Down Syndrome diagnosis on this podcast, but we've never discussed doctors and diagnoses and DS with actual medical researchers! Meg Wilkes and Stephanie Meredith are shifting the diagnosis narrative through their research. Meg is pursuing a masters degree in genetic counseling at the University of South Carolina and her thesis is on: ‘Redefining the Essential Informational Needs of Parents Receiving a Diagnosis of Down Syndrome.’ Stephanie is the medical outreach director at the University of Kentucky who is overseeing Meg’s research, and her 19-year-old son has Down Syndrome! Thankfully, this medical duo knows that a newborn with DS has a lot more than health issues and doctors appointments ahead of them, and that’s why they’ve created a survey for all of you! Parents of children with Down Syndrome, you’re invited to tell Meg all about your diagnosis experience: what you needed to know, what you did not need to know, and what you wish you knew! Take the 10-15 minute survey here, tell a friend (or 10), and help us redefine the Down Syndrome diagnosis.Read More
“Congratulations! You’re going to have a baby with Down Syndrome..” the words Heather dreams a doctor would say when delivering a Down Syndrome diagnosis. Thankfully, fierce advocates like Jen Jacob are here to make that vision a reality. Jen is the co-author of "The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood" and the author and a contributor for "Unexpected, Stories of a Down Syndrome Diagnosis." Jen is also the co-founder and Executive Director for the Down Syndrome Diagnosis Network.
Today, we’re chatting about doctor’s appointments, community groups, and Jen’s incredible work with the Down Syndrome Diagnosis Network. Serving over 9,000 families, Jen Jacob is literally shifting the Down Syndrome narrative, in doctor’s offices and delivery rooms everywhere.Read More