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  • Mon, January 06, 2020 12:56 PM | Anonymous member

    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 11:13 AM | Anonymous member

    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 6:55 AM | Anonymous member

    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 11:11 AM | Anonymous member

    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!

  • Fri, December 27, 2019 8:57 AM | Anonymous member

    This guest blog series on the history of Down Syndrome Affiliates in Action was written and compiled with input from numerous past DSAIA board members. 

    First, I want to start by using that famous phrase: "If I have seen further it is by standing on the shoulders of Giants.” [FYI that phrase originated with Bernard of Chartres and then more plainly by Sir Isaac Newton.]

    So, if you are a parent of a child with Down syndrome and see a bright future for him or her, it’s because you have a great vantage point. You truly stand on the shoulders of those who came before you in the disability/advocacy community.

    But many members of Down Syndrome Affiliates In Action (DSAIA) might not know OUR history, the history of the organization. I think it is important to know how our trade association, the only organization whose consumers are local and regional Down syndrome (DS) organizations, began. The organization was born because of a conference that was the idea of some shoulders upon which we now stand.

    I had been part of the Down syndrome world since 1991 and been a bit confused by the two national American organizations that existed then. And I wasn’t there in person but I heard a lot about the Canadian Down Syndrome Society’s national convention in the summer of 2006. There were about a dozen “Americans” walking to dinner that included the executive director of the Down Syndrome Guild of Greater Kansas City (DSGKC) who shared with the others her idea for a conference specifically for local Down syndrome organizations and their leaders: staff and board to all get together to share ideas regarding programming, fund raising, development, etc.

    A few months later I was intrigued when I received my invitation and remember telling my only other staff member: “Let’s give this a try and see what comes out of it.” I wasn’t holding out much hope that it would be a benefit to us as leaders of a local group.

    Fast forward to February 2007. With the vision of the executive director and the board president of DSG and their board’s support, DSG hosted the first Affiliates in Action (AIA) conference in Kansas City.

    We had 63 attendees. It was bitterly cold, especially for this Floridian.

    At that small conference, I met several people who, over 12 years later, I consider tremendous friends. But more than the friendship was the bond that began at AIA from what we learned and shared with each other.

    For many, including me, the AIA conference was nirvana.

    DSG organized it so well. There were a few mini-breakout sessions covering specific topics, there were round-table discussions that forced attendees to move and meet people they didn’t know, there was a room where every organization was encouraged to share printed copies or flyers of their programs, by-laws, development ideas, Buddy Walk materials (and yes, in 2007, there was only Buddy Walk), and more. That was tremendous. Collectively, I think the contributors to the info-table spent $500 or more at the local copy shop because absolutely no one brought enough materials to share. There was also just enough time allowed to go find the people who brought material you wanted to know more about.

    In 2007, I’d been to dozens of national DS conventions (both NDSS and NDSC held them every year back then), but AIA was something different. Something special. I was not there as a parent of a child with Down syndrome, I was there as a leader in my local DS organization. THAT was the focus. THAT was the difference…and what a difference it was.

    In the general roundtable discussions, many common pains that local/regional organizations faced were discussed. One was the lack of an awareness campaign that could be shared by all DSA’s.

    One of the attendees was David Forney, a National Down Syndrome Congress (NDSC) vice president. He heard us. He took notes. He asked questions. David was also in the right business professionally. Our collective voices were heard, and there was—gasp—action.

    Five months later, at the annual NDSC Convention (also held in Kansas City that year), with David’s imagination and leadership, the “More Alike Than Different” campaign was launched. I know see this phrase thrown around so casually by new parents who have no idea that it was created thoughtfully and intentionally based on feedback from leaders of DSAs from all around the country. What a testament to collaboration! [Want to read what David Forney is thinking about these days? Check out his guest blog for us here]

    I remember frank conversations with staff and board members as well as my new friends. We each had gone to Kansas City thinking OUR local DSA was perfect and a trail blazer. We flew home realizing we were bringing back MUCH more than we contributed. And I’m confident that every other one of those 60+ attendees felt the same.

    What DSG’s executive director, board president, and leadership realized when they organized this small conference was that each local or regional DSA was building their own wheel, program by program, fundraising idea by fundraising idea, board development plan, etc. There was not a platform to share what you know and to learn what you don’t for DS group leaders. Not until February 2007 in Kansas City. Prior, there was not a meeting specifically for Down syndrome LEADERSHIP.

    Once there was, the 60-some of us demanded more. And DSG didn’t let us down.

    In the next installments to be shared Jan. 1, 2020, I’ll share more about the history of DSAIA involving the next few AIA conferences. (A committee was formed that included leadership from around the country.)

    I’ll end this post where I began. We stand on the shoulders of those who came before us. And credit for this historical series of blog posts goes to many of those giants—they know who they are. If today, your organization has benefited from the products, services, training and mission of DSAIA, acknowledge and respect our shared history. As a community of DS leadership, we are all grateful to the visionaries who saw the need and worked to address it.

  • Wed, December 11, 2019 12:24 PM | Anonymous member

    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 ( 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. 

  • Tue, December 03, 2019 9:35 AM | Anonymous member

    This guest blog post is written by Erin Suelmann, Executive Director, Down Syndrome Association of Greater St. Louis

    Do you ever feel alone in your job? You’re standing in the middle of your busy office, busy home, or in the midst of 2,500 people at your walk, but you still feel like no one else really “gets it?” As the ED of the Down Syndrome Association of Greater St. Louis, I feel this way frequently! Whether you are in charge of finances, programs, grants, volunteers, development, the board, or the entire association, I think everyone feels like they are in their own world sometimes. That balancing it all is impossible.

    Well, you’re not! It’s not! DSAIA, and our big, wonderful network of amazing, passionate people are out there just waiting for you to connect. I know this not only because I am on the board of directors of the DSAIA with some of the most impressive people I’ve ever known, but also because I currently participate in DSAIA Leaders’ Circles. Whether you are struggling with program attendance, are looking to diversify revenue with planned giving, are going through a strategic plan, or just want to celebrate a huge victory for your association, DSAIA is there. Our network of professionals knows exactly what you are going through because we are going through it too!

    I have met so many wonderful people through DSAIA since I joined seven years ago and the Leaders’ Circles have helped me form more personal relationships with colleagues who “get it.” It is such a comfort knowing that there are other people just a phone call or email away willing and excited to share their knowledge and experience to help my association grow. It is also such a joy to know that I can share my successes with other leaders to help them grow their capacity. The Leaders’ Circles, because they are monthly scheduled calls, make brainstorming, sharing, problem solving and celebrating, part of my routine. What a gift?

    This holiday season, give yourself the gift of DSAIA membership and a network of experts and friends across the country. We can’t wait to connect with you!

  • Mon, November 25, 2019 12:26 PM | Anonymous member

    Guest Blog Post by Mac Macsovits, executive director of the Rocky Mountain Down Syndrome Association and a past president of Down Syndrome Affiliates in Action.

    A little over 13 years ago, my first child was born. We welcomed into the World a healthy, beautiful, innocent child. Little did we know at that time, how much our lives would forever be changed. We knew that parenting, in general, was going to change our lives, but we were not prepared when the doctor told us that our son had Down syndrome.

    Looking back, a few things stick with me: first, I was not prepared for the profound change (positively) that having a child with special needs would have on me. And second, I was not aware of the many resources that were available to me, my wife, and son. In those early days we were introduced to our local affiliate here in Denver. The social worker at the hospital handed us a brochure and said: “Take a look at this, but you can’t keep it, it is our last brochure.” As I reflect on that conversation, two things come to mind: 1) why didn’t the hospital have more brochures and 2) what the hell am I going to do?

    It wasn’t long before I found myself leading that affiliate that had one brochure not only at our hospital, but several medical facilities across the state. I’m happy to say we have fixed that, taken ownership of our responsibility to the hospital staff as well as the families that receive a diagnosis of Down syndrome for their child.

    I seriously doubt that our organization is much different from most out there that are serving people with Down syndrome. We have grown, continue to grow, and are leading so many families, medical professionals, educators, etc. on paths that seemed impossible to travel just 10-15 years ago. My how the times have changed. Once we take ownership of our own situation, tackle the “impossible,” and make the choice to be the difference, we can then begin to have a real impact. That is what we do, after all; we change and save lives. One at a time. With limited resources. As many have, our organization has grown and morphed over the years I have been the Executive Director. We have hit some road-blocks, accomplished things we were not meant to, and taken ownership of our future. Yesterday is gone forever, the future is yet to be, our destiny as a movement is in our hands today.

    I encourage us all to honor the past, those shoulders we find ourselves standing on from previous generations in this movement. Stand tall and straight. Prepare to bear the weight of those that are counting on us, now and in the future.

  • Mon, November 18, 2019 12:47 PM | Anonymous member

    If you missed last week's Taking the Pulse call, it was a fantastic community conversation with some terrific leaders and partners. And if I had to summarize it, I would have to say it exemplified everything there is to know about Down Syndrome Affiliates in Action: that we are all better (and better) together.

    First of all, the whole reason we hosted the call was because YOU, our membership asked for it. And DSAIA is not one leader or a board of directors or a team of volunteers, it is all of us together, identifying and addressing our needs together...and then figuring out how best to meet those needs. Together.

    Jim Hudson, the executive director of the Down Syndrome Association of Greater Cincinnati, was our latest member spotlighted. Jim shared all the value his organization had gained by being part of DSAIA (including as hosts for the annual conference.) He also talked about the importance of collaboration in and around the Down syndrome community and talked specifically about how that works in his home state of Ohio.

    Kathleen Forney, retired executive director of the Down Syndrome Association of Minnesota and co-chair of DSAIA 2020 Leadership Conference: Helping Create Magic, shared some big news with everyone: Zack Gottsagen, star of the award-winning film Peanut Butter Falcon, will be one of the featured keynote speakers at the event in Orlando in February.  She also talked about what members most wanted to see in terms of breakout sessions and our commitment to deliver that and more to conference attendees.

    Lauren Camp, DSAIA board president, and myself as the acting interim executive director for DSAIA, shared the latest membership survey results. 

    • Overall, more than 88% of you are very satisfied with DSAIA and more than 80% indicated that we were very responsive to questions, needs, concerns that you had contacted us about.
    • The overwhelming majority also found the webinars and annual conference high quality, useful, unique and a good value for the money… but I did note that almost 25% felt the conference price was too high so we will be factoring that into our future board conversations about what we can do strategically to lower those costs to members. 
    • 94% of you identified DSAIA as a neutral entity in the national landscape and more than 70% said that that neutrality was either extremely or very important. 
    • Regarding further/future collaboration among national Down syndrome-focused organizations, we asked you to rate how important that was to you and 69% said is was either extremely or very important.

    If there is anything you need or you have specific feedback on how Down Syndrome Affiliates in Action can better serve you so that you, in turn, can better serve individuals with Down syndrome and their families, please give me a call at 701-354-7255 or email me.

  • Thu, November 14, 2019 3:30 PM | Anonymous member

    Guest blogger Chris Steiner, office administrator for the Miami Valley Down Syndrome Association based in Dayton, OH, contributed this week's blog post.

    “How old is your child with Down syndrome?”

    “I don’t have a child with Down syndrome.”, I reply. “So, you have another relative with Down syndrome?” “No, I don’t have another relative with Down syndrome.”, I reply. The trajectory of the conversation has gone in several different directions, in my experience.

    However, the underlying feeling I often get is, my passion and purpose for working for a DSA is being question.

    I began working for the MVDSA in November 2015 (quickly approaching my 4th anniversary). All of the employees (current and previous) and board members have or had a child with Down syndrome. I was recommended for the position by a friend of mine that has a child with Ds; it didn’t even occur to me this could be a concern. I did occur to me that I had broken barriers and stereotypes in the past and I was confident I could do it again.

    Did I do anything different or change any of my normal methods of approaching my new role? No, I didn’t. I have been in a customer service role for nearly all of my working career and I used many of the same techniques as the MVDSA Office Administrator.

    The member families are the clients for which I am here to serve while also ensuring I maintain appropriate ethical business practices. I think it took some period of observation from many of the member families and believe me there were some awkward moments, but in time I started noticing that people were less hesitant and much more inclined to approach me with a variety of topics.

    Fast forward to 2017. I was certainly getting more comfortable and felt “at home” with the MVDSA families and friends. By this time, there were two new hires in our office.

    The events coordinator had an aunt and a nephew with Ds. The bookkeeper did not have a connection to Ds – but she was the bookkeeper which is a specialized field and basically doesn’t “count”. The “uncomfortable feeling” returned a little but it quickly dissipated. I was fortunate enough to attended my first DSAIA conference in that year.

    That uncomfortable feeling came rushing back during the conference when meeting new folks from other DSAs around the country. I do believe it helped that I had been with the organization for over a year and experienced Buddy Walk®, supported other MVDSA fundraisers and other events and was still “gutting it out”. I knew I had proven it to myself and to the organization that I was worthy and had passion for the Ds community and therefore the feeling didn’t last long.

    I want to tell you all, I know I belong here, I know I bring something special to the MVDSA. I know this because of the comments and actions of the Ds families and friends. I know because one of the MVDSA founding families has told me at nearly every fundraising event that they are happy to see me and that I always have a smile onmy face, no matter the situation. I know this because more than one of the board members has basically told me I can never leave. And finally, I know this because just yesterday, a MVDSA mom took her lunch break to come and get her 2020 calendars and gave a me a huge hug before she left for to finish the rest of her busy day.

    Lastly, while I don’t have a familial connection to Down syndrome; I do have my nephew Ben. He is a 33 year guy with a typical twin sister. He is our family’s everything. P.S. He loves the Buckeyes, women’s tennis and all things musical (Barbra Streisand, Celine Dion, you get the picture).

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


Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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Missoula, Montana   59802



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