Getting ready for the Down Syndrome Affiliates in Action conference

DSAIA LogoWhat should you do if you are attending the Down Syndrome Affiliates in Action Annual Conference? 

In 2007, a good friend of mine called me and said, “Hey, there’s this conference happening in Kansas City. I think you should be there.” My life was forever changed.

That was the first Affiliates in Action (AIA) conference. Then, there were just 63 board and staff members of local Down syndrome organizations (“affiliates”) in one room. AIA soon experienced rapid growth: the very next year, attendance was 180 and there were plenaries and breakouts; in 2009, 300 attendees went to Capitol Hill in D.C. AIA is now an incorporated non-profit trade association that supports local Down syndrome organizations across the United States year-round.

The year 2007 was also when the standards for offering prenatal testing changed from only those mothers over the age of 35, to all expectant mothers. The challenges and issues associated with the new standards were discussed at the first AIA conference.

Since then, a regular staple of the conference is to feature plenaries and breakouts focused on advances in prenatal testing and best practices for medical outreach and supporting new and expectant parent (the importance of which was written about here). AIA supports organizations throughout the year through webinars on these subjects presented by experts and answering questions organizations may have or receive from media or member inquiries.

At the 2008 AIA conference, task forces were proposed to address specific issues of concern, with prenatal testing being one of them. The Informed Decision Making Task Force, which I founded and chair, stood up and has held monthly conference calls ever since. In addition to staying up-to-date on the latest developments in prenatal testing, the Task Force has played a role in developing new resources for expectant parents and led efforts to exhibit at regional medical conferences, among many other good works.

If you are attending the AIA conference, I hope you will commit to having a representative from your organization attend a session on medical outreach and new and expectant parent support. Local organizations thrive depending on the engagement of their new families. They also best serve their members by having strong relationships with their local medical communities in order to refer members to the appropriate provider, and receive referrals from those providers of new families.

The AIA conference, though, is much more than these important sessions. If you are attending, I hope you will be ready to play full out.

What does that mean? Well in addition to the apt description provided by Michael Hyatt at this blog post, at the AIA conference think of it as being ready to meet a new member for your organization, because you just may.

Attendees to the AIA conference are active in their local organizations–they wouldn’t be attending if they weren’t. This means that those attending are the board and staff members who make a point of introducing themselves to the new families at their annual walks, family potlucks, and community events. They share the mission of their organization, how it can help families, and why donors should support it. Take that same attitude with you to AIA because it applies just the same.

The contacts I made at that very first AIA conference I still reach out to. Moreover, we support each other’s organizations financially. This is both because many of us are friends and support each other’s family’s walk teams. But, just like every donor, we contribute out of recognition of the value their group has provided ours.

And, just like when you meet those new families or donors, I hope you will also HAVE FUN. For those who regularly attend AIA, it has a bit of a summer camp feel, reuniting with old friends and staying up late talking about the year since we were last together. If you’re new, you will be welcomed into your own late-night group of friends, if you play full out, introduce yourself, share about your organization, and listen to others share their story.

The AIA conference is held annually at the beginning of the year. If you missed this year’s, be sure to plan on attending next year’s.

If you have a story about the AIA conference that may benefit others considering attending, please share it in the comments. 


  1. […] from the National Center on Prenatal & Postnatal Down Syndrome Resources at the 2013 Down Syndrome Affiliates in Action […]

Leave a Reply

%d bloggers like this: