Special thanks to today's guest blogger Stephanie Meredith who is the Information Services Director, KentuckyWorks Staff, and Program Director, Human Development Institute National Center for Prenatal and Postnatal Resources, University of Kentucky.
I attended my first DSAIA meeting in Phoenix in 2008 (which was the second AIA meeting), and this meeting was when my husband and I initially shared our prototype of our Lettercase "Understanding a Down Syndrome Diagnosis" booklet (lettercase.org) for expectant parents receiving a prenatal diagnosis.
At that point, no other resources had been specifically created for a prenatal audience, and DSAIA gave us an opportunity to share this material with the broader Down syndrome community. Through those initial conversations at DSAIA with leaders like Dr. Brian Skotko, Sarah Cullen, Madeleine Will, Mark Leach, David Hoppe, Amy Allison, and so many other wonderful friends, we presented our book to the Kennedy Foundation First Call Committee and then the Down syndrome Consensus Group, which included representatives of the national medical and advocacy organizations. Now our initial idea is a full program at the University of Kentucky’s Human Development Institute with over a hundred thousand online and print resources that have been disseminated worldwide in 10 different languages.
These first conversations were central to getting the medical and advocacy communities to collaborate on solutions for improving the diagnosis experience for families. We still have a long way to go, but the diagnosis stories are much better than a decade ago as local organizations have plunged into prenatal medical outreach and expectant parent support. In addition, more organizations like the Down Syndrome Diagnosis Network are engaged in the work of improving the diagnosis experience, and our Lettercase National Center for Prenatal and Postnatal Resources has also been able to serve as mentor for advocacy organizations representing other genetic conditions that can be prenatally diagnosed. Notably, we are continuing to see a thriving population of babies with Down syndrome born in the US, particularly in areas with robust medical outreach programs.
DSAIA provided and continues to provide a unique opportunity for local and national Down syndrome organizations to share life-changing ideas, resources, and programs with each other to make the world a better place for people with Down syndrome. Amy Allison and Bridget Murphy shared that initial vision in Kansas City in 2007, and DSAIA offered the promise of being a hub for organizations to share and replicate their best ideas; establish standards of excellence for local and national organizations; and provide a forum for leaders to discuss the most pressing issues—like prenatal testing. Our family was inspired by that vision a decade ago, and we became involved in founding DSAIA alongside a cadre of dedicated advocates like Amy, Bridget, Mark, our dear Lori Barta and Steve Beck (who we lost too soon), Kori, Joe, Dean, Amy VB, Mac, and so many more who have become lifelong friends. My husband created the first DSAIA website and planned the first ever DC conference alongside Amy; I helped draft the original bylaws and marketing resources; and Mark Leach and I created the longest standing DSAIA task force, the Informed Decision-Making Task Force.
I’m proud to have been involved in the funding of this organization that has helped us to grow and share those seedlings of the best ideas to benefit people with Down syndrome and their families nationwide and to build up a new generation of leaders in this community, and I look forward to seeing what can happen when we engage in even more collaboration in the future.