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  • Fri, January 17, 2020 8:03 AM | Anonymous member (Administrator)

    Ashley Edwards, our guest blogger for every day this week of Jan. 13, 2020, is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    This is MY FAVORITE THING TO TALK ABOUT. Like, ever! I love, love, love Orlando, and one of my very things about living here is our rapidly growing—and thriving—food scene. So maybe you don’t have the time, energy, or money to eat your way through Orlando. I’m not even sure that’s possible; there are tons of amazing food options. I would say within the past decade we’ve really seen a boom in our local food scene. Everything from food trucks to farm-to-table concepts to taco joints. And I’m not hating any of it.

    Like I mentioned, there are so many places to grab great food here in Central Florida, but some worth noting (and some personal favorites) during a short visit are:


    §  Black Bean Deli


    §  Dandelion Community Café

    §  Hummus House

    §  Season’s 52

    <insert image of Hummus House>


    §  Lazy Moon Pizza

    §  Pizza Bruno

    §  Prato

    <insert image of Lazy Moon>


    §  Amura

    §  Seito Sushi

    §  Shin


    §  Black Rooster Taqueria

    §  Reyes Mezcaleria

    §  Tako Cheena

    §  Tin & Taco

  • Thu, January 16, 2020 1:03 PM | Anonymous member (Administrator)

    Guest Blogger Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    #Thirsty Thursday has always been one of my favorite themes in the Social Media world. And there’s no shortage of delicious places to whet your whistle. If beer is your thing Orlando has a thriving local brewery scene. Almost too many to choose from, actually. So here are some of my favorites for you to check out: Ivanhoe Park Brewing Company, Ten 10 Brewing Company, and Orlando Brewing. There are also some craft cocktail bars peppered throughout the Central Florida area with charming atmospheres and tasty drinks. The Courtesyin downtown Orlando, Pharmacy in the Dr. Phillips area, and Tori Tori in the Mills 50 District are some gems worth checking out. But if adult beverages aren’t your things, I totally get it. There are a lot of coffee shops and tea joints around town: Infusion Tea, ROYALTEA.

  • Wed, January 15, 2020 11:48 AM | Anonymous member (Administrator)

    It is final call if you are interested in meeting and speaking with the top decisionmakers of local and national Down syndrome organizations from all across the nation. 

    Single tables are only $350. Click here for further details:

    2020 DSAIA Conference Sponsorship Brochure FINAL.pdf

  • Wed, January 15, 2020 11:28 AM | Anonymous member (Administrator)

    Guest Blogger Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    Is shopping your thing? Well, then – shop till you drop! Central Florida has some great shopping in the way malls (The Mall at Millenia, The Florida Mall) as well as the outlet stores we’re notorious for. But aside from that there are some fantastic local stores, but new and vintage. A few of my favorites are Freehand Goods (in both East End Market as well as the Hourglass District), Adjectives Market in Winter Park Village, and Avalon Exchangewhich is a really nice, higher-end thrift store located near Rollins College in Winter Park.

  • Tue, January 14, 2020 10:42 AM | Anonymous member (Administrator)

    Today's guest blog post comes from Ashley Edwards. Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    Obviously Orlando is known all over the world for first-class theme parks: Walt Disney World, Universal Orlando Resort, and SeaWorld Orlando to name a few (there are a handful of others, did ya know?). But where we think we truly shine is some of the local activities we have to offer residents and out-of-towners alike. If you could only pick a few we’d most definitely recommend:

    • (Harry P.) Leu Gardens. “Leu Gardens” as we residents refer to it, it really quite an amazing treasure. Located in one of our beautiful neighborhoods called Audubon Park, the gardens are breeding ground for stunning flowers and trees, exhibits throughout the year, and monthly “movies in the gardens.” It truly is something to see.

    • A stroll around Park Avenue in Winter Park. “The Avenue” is a must-see for any visitor, packed with shopping, restaurants, coffee shops and bookstores. One of my favorites is a spice store on the north end of the street called The Spice & Tea Exchange – you can find amazing flavors to spruce up your own food, and countless kinds of teas.

    • Explore Mead Botanical Garden. Mead Garden is most definitely a little treasure of ours here in Central Florida. In fact, it’s tucked away in a quaint little neighborhood just on the south tip of Winter Park. In addition to encountering seasonal flowers and plants, there are walking trails to explore the surrounding area, and outdoor pavilions equipped with grills just yearning to be used for a picnic. 

    Visit the Orlando Museum of Art. The Orlando Museum is something real special. As with any similar museum there are circulating exhibits, but there’s always something interesting and thought-provoking to view. It’s also a gorgeous space inviting in lots of nature lighting, and the gift shop is pretty special!

  • Mon, January 13, 2020 8:27 AM | Anonymous member (Administrator)

    This week's guest blogger is Ashley Edwards. Ashley Edwards is a 21+ year resident of Central Florida, and lover of the city of Orlando. He's a connector and blogger. A huge tennis fan (and plays frequently). Is electronica obsessed. An eternally challenged optimist. Digital  world traveler. And Social Media Strategist.

    You want to see the “real” Orlando, don’t you? If you have any amount of spare time and want to get to know #TheCityBeautiful the way those who call it home do, one of the first places you want to head is to downtown Orlando and take a stroll around Lake Eola. It’s iconic to Central Florida, and has become one of the most recognizable landmarks to the area. With a gigantic fountain at the center, Lake Eola is not only at the epicenter of the downtown area but hosts families of famous swans (well, famous in the sense they have their very own Instagram), nearby eateries like World of Beer, and a stunning, recently refurbished little Inn. There are also great restaurants and bars a couple of blocks in any direction – Thornton Park is worth a visit.

    If you really want to tap into what’s going on in “local life” during your visit, check out Orlando Bungalower, Orlando Weekly, Pulptown, and Pulse of Central Florida.

  • Mon, January 06, 2020 2:56 PM | Anonymous member (Administrator)

    This guest blog was written by DSAIA board member Brandy Snow.

    Imagine you’re headed down a path. A path to an extremely desirable end. You’ve been told that where you’re going there are people with values like love, strength, perseverance, comradeship, care, and hope. It sounds much like what you imagine heaven to be. So you take an inventory of what you might need along the trip, you pack, and set off on your journey. You feel feelings like anxiety and nervousness in conjunction with excitement and hope. Maybe you’ve done this before and when you got there it wasn’t at all what you thought it would be. Disappointment at best. Pain and hurt at worst.

    As you move down the path filled with exposed roots and steep climbs and otherwise difficult terrain. You doubt your ability to finish. You question your decision. You wonder if it’s going to be worth it.

    Then, just when you think about turning around, your “Navi Fairy” appears.

    For folks that aren’t familiar, the “Navi Fairy” is Link from Legend of Zelda’s journey guide. She isn’t always present, but she appears when summoned and pops up when she sees a need or Link is in trouble. She’s there to guide him in his effort to save Hyrule, a beautiful, lush, albeit fictional, land.

    Yes, I’ve played a lot of video games, as do my two boys, obviously, but hear me out. 

    I imagine DSAIA to play a role a similar to that of Link’s Navi Fairy. A team of  helpful, experienced leaders in the Down syndrome community that provide guidance and direction as well as opportunities for collaboration and shared labor. An invaluable source of resources and tools to get the job done.

    DSAIA has been more than resources and information, though. They have brought together likeminded professionals, cultivated partnerships, and procured an environment inspiring societal change. Personally, because of DSAIA, I have met and become friends with people I would not have otherwise had the pleasure of knowing, let alone been inspired by. They help us all move along this journey to that most desirable, welcoming, and inclusive end. 

  • Thu, January 02, 2020 1:13 PM | Anonymous member (Administrator)

    The Vote

    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. 

    The Transition 

    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.

  • Wed, January 01, 2020 8:55 AM | Anonymous member (Administrator)

    2009, Washington, DC. (OK---Alexandria, VA)

    Immediately after Scottsdale, DSG and the conference planning committee got to work on the 2009 conference. We strategically combined AIA with the National Down Syndrome Society (NDSS) Buddy Walk® on Washington, and that generated better attendance for both events. AIA attendance was slightly over 200.   

    NDSS, NDSC, LuMind (then DSRTF) and Global Down Syndrome Foundation all attended, exhibited, and presented in Washington, DC. Not only was there great representation by the national organizations, we saw more local board leadership after positive feedback from their 2007 and 2008 attendence. 

    There were more breakouts and more plenary sessions, and the content continued to improve. 2009 is when many of us met and became familiar with U.S. Representative Cathy McMorris Rogers. She spoke while her son Cole happily played on the floor of the ballroom. 

    NDSC Executive Director David Tolleson gave one of the most moving speeches our movement has ever witnessed. However, most people in the room, including me, quickly forgot about it because of what happened next. We had drama with a capital D!  

    Jon Colman, NDSS president, followed David and laid out NDSS’s revised plan for licensing contracts with local groups for using the Buddy Walk® brand and program. It was a significant change from the less formal structure most DSAs were used to. In short, groups paid 7% of their walk gross to NDSS for brand usage. For smaller walks, this worked in their favor financially. For larger walks, it was a huge increase from their former contribution to NDSS following their walks. One of the most troubling components was this change took place in 2009, and they got the news just months before “walk” season, and local groups’ 2009 budgets were already in place. 

    Just looking around at everyone’s faces, there was only one topic for the rest of the conference. The 2009 conference, no matter how relevant and successful to that point, would only be remembered by the Buddy Walk® bomb.  

    There was no shortage of opinions, conversations, ire, and confusion for the rest of the conference. NDSS did present more details in a break-out session after the announcement, but...emotions were running very high, and civility was not always on display. 

    I hope many DSA leaders left the 2009 AIA conference with positive take-aways and great program ideas to improve services for their members. Many of us left with a headache and a sick feeling our community was in store for more divisiveness. 

    It was the Monday after the conference when the DSG board contacted other local leaders to express its concern about the time, effort, and energy that hosting the AIA conference took away from serving their members and families in Greater Kansas City. There would commit financially to hosting a 2010 conference, but there was a lot of uncertainty after that. The discussion began about AIA becoming an independent trade association, not just an annual conference...or what to do to make sure the conference continued...but that is for the next installment in this series.

  • Mon, December 30, 2019 1:11 PM | Anonymous member (Administrator)

    In the last installment, Part 1, I discussed the excitement felt by myself and many others when we left Kansas City in February 2007. In my attempt to share our history, here is a summary of the next Affiliates in Action (AIA) conference hosted by Down Syndrome Guild of Greater Kansas City (DSG) in 2008. [If you want to check out Stephanie Meredith’s perspective on the 2008 event, her guest blog is here.]

    2008, Scottsdale, AZ 

    First, many leaders from the 2007 AIA conference knew that the 2008 conference would be even more well-attended than the first meeting. The attendance was about 188 as compared to the 63 attendees the year before. 

    Luckily, DSG leadership reached out to a group of past attendees, Down Syndrome (DS) group board members and staff, to ask them to join the conference committee. They needed the help. 

    While still primarily peer-driven, the goal was to have keynote speakers with national prominence on topics that truly impacted our community and to have many breakout sessions about programs started by local DS groups that could be replicated anywhere. 

    A couple of great entertainment components were added in the evenings, including a talent show and dine-around, which are still big hits at DSAIA conferences. Keep in mind, AIA was just a conference put on by one local group, DSGKC. It was their financial exposure with the hotel contract, food minimum, etc. 

    Understanding this is crucial as I share about the dilemma from 2008. 

    I remember the individual who would go on to become DSAIA’s first board president talking to the president of the DSG board, asking if something was on her mind. During the first night of what was shaping up as a tremendously successful conference, the DSG president seemed troubled. She explained her board would not allow DSG to sponsor another AIA conference because of the financial liability. Should the registration tank, her organization was on the hook for the room and food minimum. Potentially tens of thousands of dollars. 

    So the future DSAIA board president met with the DSG president privately and shared some notes he had made on a napkin. He had thought about how to remove the entire financial burden from DSG and started to develop a plan to share that liability among all the groups in attendance.  

    After the DSG president took those thoughts to the rest of her board, a powerpoint was created and all the groups were asked to “park” $2,000, or what they could afford, in an independent account. The money still belonged to their group and could only be accessed should the contract minimums not be met. Thanks to vision, passion and some creativity on a napkin, the future of AIA was saved.

    However, that is the backstory. The bigger story is how quality programs started to expand to more groups.  How our movement’s most important issues (political advocacy, awareness, medical research) were being discussed and advances were being made by each local organization who sent their leadership to this conference. AIA was very important to the Down syndrome movement, and every attendee in Scottsdale knew it. 

    Part 3 focusing on the 2009 AIA conference held in Washington, DC will be tomorrow's post. Stay tuned!

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I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


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