Within days after the 2009 Affiliates in Action (AIA) conference concluded, conversations were going on regarding the future of AIA. Should AIA be an independent, year-round-membership trade association, or should the conference become a part of an existing national Down Syndrome (DS) organization.
While the AIA conference was solely the “property” of the Down Syndrome Guild of KC (DSG), they sought input from those of us that had served on prior conference committees and several leaders who saw such value in the conferences. Additionally, they knew the success of a trade association or rolling AIA into another organization depended on the desires of the greater DS affiliate community.
Should AIA become a part of an existing organization, National Down Syndrome Congress (NDSC) was the best fit. They were already in the “convention business” and had an affiliate component. After conversations with NDSC leadership, it was decided a presentation of both ideas would be made to the affiliate community, and each local DS group represented on the call would get one vote.
My numbers are a bit sketchy after almost ten years, but we had almost 90 people on the call. Two passionate presentations were made, and everyone on the call could ask questions about either plan. There were some pointed and difficult questions, but I remember being pleased with the civility and respectful manner of the meeting. Then it was time for a vote. I don’t recall the number of DS groups represented and many abstained. The final count was 27-23 in favor of AIA becoming an independent, year-round, membership-based trade association.
The Steering Committee
Then the hard work truly began. By July or August of 2009, a steering committee was formed. Our job was to build the framework of a trade association. The launch of the newly named Down Syndrome Affiliates in Action (DSAIA) trade association was early March 2010, and we had a matter of months to give the inaugural board of directors, whomever they would be, as much organizational structure as we could. It’s important to understand, all we could do is provide a collection of ideas that they could adopt, reject, or rewrite and tweak.
The steering committee met often and worked on a mission statement, by-laws, collection of materials for the eventual online library, committee structure, a sustainability model, and much more. Part of the sustainability was asking the DS groups who had “parked” $2000 in a fund for hotel contracts, etc. to release that money as a gift to fund DSAIA. Most did, and it greatly helped. Also, we accepted DSAIA membership applications, and realized we needed to have 50 members to launch and sustain. (Fortunately, we had 55.)
Many of us did double duty and served on the steering committee and 2010 conference committee. As March 2010 drew closer, we searched for candidates for a full-time executive director (ED). The steering committee hired an ED with the limited authority we had. Our hire understood a formal employment contract could not be offered until the membership elected a board. Regardless, we gave her a crash course on the DS movement, the roles of local and national DS groups, and the vision of what DSAIA would become and the void in the community DSAIA could fill. We also accepted applications for DSAIA board service. Many of the steering committee applied, including me, and we had some welcomed “new blood” with desirable skill sets.
AIA 2010-- the final conference hosted by DSG and the launch of DSAIA. It was an exciting weekend looking to the future, but it started with the realization the first day that our new, almost-hired ED was NOT going to work out, and she knew it, too. One of my favorite idioms is “If two people are walking down the wrong path, which is the wisest? The one who turns around first!”
Saturday morning, she was on a plane back home. The consensus of the Steering Committee was----better now than six months from now! We’d rather this organization launch with no executive director than the wrong one.
The conference was spectacular. The speakers, the plenary sessions, and the growth in exhibitors, including suppliers of products and services in anticipation of the launch and exposure to a new customer base. But much of the excitement was around the transition, the election of a board, and the launch of a new and needed organization who specifically served its members, local DS groups.
But we had no staff.
One of DSAIA’s close friends over the years was Jawanda Mast, who cornered soon-to-be Board President Joe Meares in the hall and asked if he knew Deanna Tharpe. He said yes, but not well. Jawanda knew that Deanna was resigning as ED of the Red River DS group in Texas (that she also founded) to move to North Dakota, and that she might be a candidate for DSAIA Executive Director as long as it was a remote position, which is what the steering committee had planned on. Deanna was a presenter at a breakout session and so Joe attended it and was impressed by what he saw and heard. And after a preliminary conversation, Deanna was interested in further discussion.
A Board of Directors (BOD) was elected later that day, and we all went to a meeting room to elect officers and to make the DSAIA trade association official. I (Amy Van Bergen) was elected to the board and went on to serve as the organization’s vice president. Joe, elected as president, was empowered to have a legitimate conversation with Deanna about employment. (And after due process, Deanna Tharpe was hired as our first ED.)
We had a town hall meeting Sunday morning, as we had done since 2008. The board was a little nervous but after 90 minutes, there was clearly tremendous belief and support in what those assembled were all a part of and the void that DSAIA would fill in affiliate services. Joe went on to serve two terms as board president and I went on to serve as its vice president with a diverse and passionate group of leaders. Seeing the world pre- and post-DSAIA, it is clear that this labor of love has been among the most meaningful and impactful many of us have ever experienced.
The final AIA conference hosted by DSG was financially successful. A tremendously gracious gesture was made by DSG when they gave their net profits of their final conference to DSAIA.
The First Year
Not everyone in the DS community understood the purpose or necessity of DSAIA. We were often referred to as The Third National,” and people would moan as they said that. That label never sat well with those of us in leadership roles or those who were engaged members who truly understood our mission.
Year One was spent making sure all members, potential members, and other national organizations understood our mission, as well as making sure every national organization with a member of affiliate component clearly identified their sandbox, objectives, and core consumers and understood ours. DSAIA’s core consumers were, and continue to be, local and regional DS organizations, not individuals with DS. Former Speaker of the House, Tip O’Neill said, “All politics is local.” I believe the best, but not the only, resources for people with DS and their families is from their local organizations, and giving these groups the tools and resources to better serve THEIR members was and is a worthy and lofty objective. That is why DSAIA exists.
In the first year, our member services committee brokered many discount programs shared by DSAIA members. Our online library grew weekly, including programs, templates for everything used by DS groups (walks, events, fund raising, and on and on and on), informative webinars, board structure and by-law documents, best practice information, and much, much more. All of that is still there and has exponentially grown since 2010.
Our message and mission began to be understood in the greater community, and DSAIA was trusted to stay true to our mission. Our membership grew each year, and our partnerships and collaborations with other national organizations increased. They grew to trust us that we would truly “stay in our lane” and serve DS leadership needs exclusively.
There were several years with very little divisiveness in our greater community, and many of us old-timers sincerely believe DSAIA played a significant part in this movement of working together.
While the mission of DSAIA has changed and the organization has evolved, I’ll always fondly remember 2010-2014. And I still favor our original mission:
“The mission of Down Syndrome Affiliates In Action is to support and advance the growth and service capabilities of the local and regional Down syndrome organizations we serve, to be the conduit of value-driven training, programs, best practices and support for our members.”
It was perfect: the perfect message for our transition from a conference to an organization, and it served us well during this decade. The entire leadership—past and present—are grateful to DSG KC. It would never have happened without the vision of its executive director and board president in those early years. We are especially grateful for the inaugural board of DSAIA and the work of our committees. That was the most dedicated and hardest working group of leaders I’ve ever known, and DSAIA is here 10 years later because of the foundation laid by that group. My heartfelt apologies for anyone I have inadvertently left out of this blog series.
Special thanks and shoutouts to the following folks for their help in sharing this history and for getting DSAIA off the ground: Mark Leach, Louise Borke, Char Hill, Connie Hutzel, Steve Beck, Joe Meares, Jawanda Mast, Sterling Lynk, Deanna Tharpe, David Egan, Laurie Kowalski, Mac Macsovits, Robbin Lyons, and Kathleen Forney.