OUR Blog

Welcome to the DSAIA Blog!

Feel free to view past blog posts. To comment on any post, please subscribe. 

DSAIA welcomes guest bloggers.  Have something to share that will benefit the local/regional Down syndrome organization? Contact us today at! 

  • Fri, November 08, 2019 5:53 AM | Anonymous member (Administrator)

    This week's blog was expertly written by our guest blogger Jonathan Gainey who presented and exhibited at DSAIA2019 and plans to join us again in 2020.

    There is a lot of water coming off of me and I am not sure what is happening!

    I’ve been working within the Down Syndrome community now for over 3 years and not a day goes by that I’m not thankful for being brought into this circle. In 2017 I began working with the Down Syndrome Association of Delaware when we started a teen and adult boxing and fitness program for their members. What started a weekly class for a twelve-week session has turned into a year-round program, and their most heavily attended program to-date.

    Since the program was started, I have co-founded Down to Box, a national non-profit that replicates what we did in Delaware for gyms across the country. The training we provide instructors and support we provide gym owners allows individuals throughout the country with Down syndrome and other intellectual or developmental disabilities the opportunity to box, gain strength, increase coordination and make friends along the way.

    Our Down to Box program in Newark, Delaware brings so much joy, energy and excitement to our local participants. It’s something the community desperately needed- consistent programs for teens and adults- while still being extremely low maintenance and high reward for the local Down syndrome organization.

    One key part of the program- getting participants active and sweating! We had a young woman first start our program and proclaim “I have water coming off of me- I am not sure what is happening!?”- that was sweat, and her mom said that at 27 years old she had never truly sweat before.

    Boxing and cardio go hand in hand and many of the options available for people over the age of 18 do not bring the physicality and intensity that would give them the health benefits they need. Boxing training is inherently cardio heavy and pushes the individuals in ways they are not typically exposed to. The fitness part of the Down to Box program is masked by the boxing aspect that is fun, engaging and interactive.

    We recently established an affiliate program through the Down Syndrome Association of Jacksonville with Debbie Revels and Coach Angel Castro. The program has been a huge success with nothing but eager, smiling and sweaty faces each week! Angel coaches the program with the same standards and intensity that he holds his other boxing classes and the results speak for themselves. Our coaches have high expectations of our boxers and are interactive and personable- the key values of Down to Box.

    We currently have 5 Down to Box Affiliate programs throughout the country and are working with Leah Janke of the Down Syndrome Association of the Midlands to bring the program to Omaha next! Luckily for the local Down syndrome association, starting up the class and training the instructions is all handled by Down to Box. I have 15 years of experience within the gym industry and understand what goes into operating a successful facility and what coaches would be a good fit for the Down to Box program. There is no cost to the local organization, some DSAs do choose to supplement the cost for participants but that is not necessary.

    I’m eager to be in touch with more DSAs around the country so that the Down to Box program can positively impact more lives.

    So if you want more information about Down to Box, contact me at:


    (302) 709-1677

  • Sun, November 03, 2019 11:38 AM | Anonymous member

    This guest blog was expertly written by Jawanda Mast, who is also known as The Sassy Southern Gal and is an independent contractor specializing in inclusion and grassroots advocacy.

    My daughter Rachel was born with Down syndrome just over 20 years ago. I tell people that you blink once, and your child is 6 and you blink twice, and he/she is 18 and graduating from high school. As I reflect on how fast time seems to fly these days, I can’t help but think of my early involvement in the larger Down syndrome community.

    Twenty years is not that long ago, but in those twenty years, the world and certainly the landscape in the Down syndrome community has changed at warp speed. When Rachel was born, I didn’t even know we had a local Down syndrome organization. The Internet was new and finding up-to-date information, organizations, and resources via cyberspace was not easy. Social media had not been born yet. That was still the stuff of science fiction you’d see in Star Trek or Star Wars. It was not a common occurrence to send things electronically or even have materials available electronically. Sharing resources usually required face-to-face meetings, a fax machine, or the US Mail service.

    When Rachel was a toddler, I began working alongside an amazing group of people in the greater Memphis area. A small group of parents had started a Buddy Walk ® to try to build an organization serving individuals with Down syndrome and their families across the life span. Like many groups around the country, I soon found myself in leadership both for the walk and the organization.

    I, and really everyone in our local group, was always eager to learn about what other groups were doing. There were many Down syndrome organizations who had been around for years and years. There were groups doing great programs. I signed up for newsletters from groups all over the country. When I went to conferences, if there was an opportunity to meet leadership from other groups, I made sure to try to meet staff and board members. Our group was doing a good job with some things such as our Buddy Walk ®, and I was always happy to share with others, too.

    But there was nothing truly focused on helping affiliates learn best practices or share information in an organized fashion. It was basically an “every man for himself” mentality. As a result of the Buddy Walk ® program, many local organizations were successfully raising funds for their local organization. Having funds is a good thing, but many groups had no structure, no by-laws, no idea about legal requirements, and had limited information on best practices. Many, if not most, groups were almost entirely volunteer driven. There was limited time to find out how to be an “affiliate” and make a maximum impact. There was truly a sense that many people and groups were holding on by a thread.

    Enter Affiliates in Action (AIA). I remember receiving an email about this “AIA” thing happening in Kansas City. I had just been hired as the first paid staff for the Down Syndrome Association of Memphis and the Mid-South. I shared the information with our Board, and they agreed to send our Buddy Walk ® Chair and me to the conference. There were 63 people (board, staff and volunteers) at that first event. It was bitter cold in Kansas City and when I arrived, I didn’t know many of them.

    When I left, I felt like I had been a part of something that was going to be a game-changer. I was right. That weekend was the beginning of what is now Down Syndrome Affiliates in Action (DSAIA). And Down syndrome community leaders were boldly going where no one had gone before.

    Just like DSAIA is today, in those early years, we were able to learn about best practices and programs that we took home and replicated in the Memphis area. We also developed deep friendships with others who were experiencing some of our same challenges. In addition to being able to learn and borrow from others, we had the opportunity to share with others. I led or co-led workshops on volunteer recruitment, building walk teams, fundraising and incorporating advocacy into your walk. Now, twelve years later, I still get a call or an email from time to time asking for information from one of those presentations. For me and our group, it was motivating and refreshing to get to know other leaders. Instead of re-creating the wheel, we found ideas and toolkits for programs and practical solutions to challenging situations. Personally, I found a great sense of fulfillment in sharing with others and being a part of something that made a meaningful impact on our local community, but also made a lasting impact on communities around the country, the larger Down syndrome community.

    For those who have only been around during this age of social media and warp-speed technology, I think it may be hard to imagine the significant impact Down Syndrome Affiliates in Action has had on the larger Down syndrome community. I commend the Down Syndrome Guild of Greater Kansas City for their vision and leadership in hosting that game-changing weekend back in 2007. I appreciate the many people from around the country who have invested their time, resources and passion to build DSAIA. DSAIA has definitely been one of the top game-changers in the Down syndrome community. I am proud, honored and humbled to have played a small part. More importantly, I will steal one of my daughter Rachel’s signature sayings: The impact DSAIA continues to have on the larger Down syndrome community “makes my heart happy.”

  • Fri, October 25, 2019 8:09 AM | Anonymous member

    This week's blog was guest written by Willie Cox, executive director of the Miami Valley Down Syndrome Association in Dayton, Ohio and he was elected to the DSAIA board of directors in 2019.

    Doing anything for the first time can be a roller coaster ride of emotion. One might feel excited, indifferent, apprehensive, or right down terrified. You may even feel several sensations simultaneously. Nevertheless, when the smoke clears and the dust settles, you garner a new experience, and perhaps, a broadened perspective. This is how I remember my first DSAIA conference.

    In many ways, I did not know what to expect. Don’t get me wrong; I did read the digital brochure. I knew who would be speaking. I understood the list of topics. I checked out the roster of great sponsors. I wrapped my head around the who, what, when, and where; I was just unclear about the “Why?”

    Why would I take time away from my “to-do” list just to do one more thing? Why would board members and volunteers use vacation time to go spend a few days with people they do not know? Why drop the cash for a conference when it could be used for programming, awareness, or … vacation? Really, the question in my mind was, “Is it worth the investment?”

    To answer in a word, yes!

    For a few days, I escaped the tyranny of the urgent. You know what I mean, don’t you? All those things that constantly pull at you like a curious toddler demanding your attention. Those things that fill your day; but, leave you feeling unfulfilled at the end of that day. Those few days at the conference forced me to flee my little world – but it welcomed me to see the universe.

    Like a skilled ophthalmologist, the conference helped clear my vision. The experience allowed me to look through the lenses of other leaders – to gain the perspectives of other professionals who desire that I succeed. It reminded me why I do what I do. These few days enabled me to see what could be, and fueled a conviction that is should be.

    I left my first conference wonderfully exhausted. I left with ideas and strategies – some to implement immediately and others to marinade in my mind. I left with renewed excitement and an increased sense of direction. I left anticipating an opportunity to return. I exited the conference universe and made my trek back to my little world, equipped to make a big difference.

    So, how about it? Are you ready to make a big difference? Do you desire to be a better leader, a more productive board member, or a high value volunteer? If so, then I invite you to hop on the roller coaster and take that ride. Come see the universe!

  • Mon, October 21, 2019 7:36 AM | Anonymous member

    From Guest Blogger Kari Jones, executive director of the Down Syndrome Association of Central Ohio

    When the Walk’s Over: The event hangover… and then the rally.

    Thank goodness for my DSAIA friends and colleagues who make me feel normal this time of year.

    I’ve basically cut off communication to the outside world—all friends, most family, and about everyone who doesn’t need something until AFTER my Walk. The only people I talk to in the weeks leading up to our Walk are my office team, about 200 team captains (WHY DON’T THEY READ THEIR EMAILS EXPLAINING ALL THE THINGS THEY CALL/TEXT/FB MESSAGE/EMAIL ME ABOUT?!), my immediate family, and my Starbucks barista. Oh, and of course my lovely colleagues from around the country who are in the trenches with me, venting about the madness, celebrating the victories, and basking in the glory of another year in the record books. Or maybe just the books. Who cares, it’s over! I’m so exhausted. We’re ALL so.very.exhausted.

    But wait, why do I always seem to forget this HUGE thing: The Walk is just the START to Down Syndrome Awareness Month. It’s 31 days filled with programs, events, “have we locked in our World Down Syndrome Day venue yet?”, social media posts, public speaking engagements, “we should really be doing more with employment…”, classroom visits, “I don’t even want to THINK about the 2020 budget yet…”, awareness campaigns, fill-in-the-blank-next-event planning, and really doing everything we can to honor people with Down syndrome, their families, and the community professionals who serve them.

    It’s amazing and glorious and tiring and beautiful and rewarding and… so many things. I love it. And you know what? I’m so grateful that I have colleagues that TOTALLY get it. Colleagues that I’ve met at DSAIA conferences, or on Leadership Circle calls, or on a DSAIA committee, or through another member who said, “You really should call so-and-so… they have a great program like what you’re trying to do…”. These incredible people (that’s YOU) make me feel like it’s totally typical to spend my day driving around in a box truck to pick up pumpkins for our Walk (that I KNOW most of the children will leave, painted and rotting, at the Walk...). The ones who validate that it’s totally typical to scream at your computer and hope your Panera delivery guy (who just happened to walk in with your lunch…) didn’t hear you. The ones who can relate to you wanting a job in which you work normal 9-5 hours while simultaneously squealing with glee when the prenatal momma you spoke to last week decides to keep the baby.

    How do I really quantify the value that DSAIA brings to me? I imagine it’s like what we hear from new parents who found their local Down syndrome association: They’re so grateful they found us. They can’t imagine life without us. And they’re so, so, so appreciative they’ve found people who “get it.” People who are walking in their shoes.

    So, to all of my friends whom I’ve met through DSAIA, the ones who are exhausted and grateful for doing work that we love, rallying through a month of October madness, and genuinely trying to do as much as possible to honor people with Down syndrome while also genuinely wishing it was November already: You can do it-- and I’m so thankful we’re in this together.

  • Wed, October 16, 2019 2:35 PM | Anonymous member

    Today's guest blogger is David Forney, see below for full biography:

    As a retired marketing communication consultant who worked with some of the biggest companies in the for-profit world and as a former board member for DSAIA, here’s what I’ve been thinking about lately

    Down Syndrome Affiliates In Action (DSAIA) presents an interesting dichotomy --best practices AND experiential learning.

    DSAIA opens the door for members to current, well-developed and sophisticated programs and processes that they can apply to sustain and improve their organizations – the best practices.

    Access to those assets, however, is essentially experiential often accessed when two or three – a group – of leaders gather to share insights gained through experience at the Leadership Conference, on a Topical Call, in a Leaders’ Circle or on a webinar. Or, when members connect with DSAIA seeking others who have launched similar programs or dealt with a similar, yet unique situation.

    I think most would agree those natural, open exchanges are at the very heart of DSAIA’s appeal.

    If you have experienced that, it’s obvious, however, it is not obvious to everyone, unfortunately. And that means we have an opportunity to more clearly and consistently communicate this unique property to less-engaged and prospective members.

    The first value expressed by DSAIA is “We model nonprofit best practices.” It is important to recognize that there are two pieces to that – “non-profit” and “best practices.” It’s that dicotomy again. While the latter, perhaps, suggests an aggressive, formal, buttoned-down persona, the former asserts the warmth and care typically associated with human services organizations.

    It might be argued, in fact, that DSAIA came into being because our organizations had matured to the point where we realized that as important as heart may be, raising funds, managing staff, developing programs and managing all efficiently also demanded businesslike discipline – those best practices.

    So, implicit in that dichotomy is the need to find balance between those two, potentially conflicting, poles. So, the pieces parts start to come together as follows:

    1. Mission: We are about Down syndrome – it is our raison d’etre. Ultimately, all that DSAIA does is focused on improving the lives of people with Down syndrome, their families and those who support them.

    2. Vision: We are focused on helping local and regional Down syndrome organizations develop organizational capacity.

    3. We are intent on achieving our vision and mission by helping members access both classic, professional expertise and – importantly – the practical, experience-based knowledge of their fellow members.

    Where improving the lives of people with Down syndrome is what we do, networking among peers and harnessing best practices are, principally, how we do it.

    4. DSAIA leverages the scope of its membership to: a) Open access to resources which would otherwise be beyond the reach of individual DSAIA member while b) helping members reduce a wide range of routine expenses. By pooling our resources we bring in leading experts while negotiating quantity discounts on material purchases.

    5. Increasingly, DSAIA is applying digital technologies to enable remote learning while providing a widely distributed membership with opportunities to gather and exchange ideas (eg. Leadership Circles).

    6. We have established and maintain an archive of materials, encompassing everything from bylaws and procedures manuals to walk promotions and tee-shirt designs which may be accessed on line and used by all DSAIA members.

    Again, I’m an old ad guy so I think in tag lines that encompass what we do, who we are and while many of you think automatically in multiple hashtags and memes, the line I think really sums up this marriage between the heart of DSAIA and the best practices it brings to all of us is this:

    Better & Better.


    What do YOU think?

    David Forney, our guest blogger today, is dad to a 41 year old man, Mack, with Down syndrome. He is also dad to a lovely young lady, Catherine, who is mom to the most wonderful humans in earth, his two grand daughters, Madeline (10) and Amelia (5) His spouse is Kathleen McDonnell-Forney — retired (sort of) ED of the DSA of Minnesota, past treasurer and President of DSAIA and just retired member of the National Down Syndrome Congress (NDSC) Board. 

    Forney is a copywriter by trade who became a creative services executive and graduated as the vice president of editorial and client services of a leading graphic design firm with an international clientele.  Clients have included Herman Miller, Steelcase, Baker Furniture, Steinway & Sons, Formica, Potlatch, the French Government, Infiniti, division of Nissan and Northrop- Grumman.

    He attended Northwestern University, graduated from the University of Minnesota and has recently returned to his alma mater since retirement to pursue the arcane topic of early Medieval art.

    He is also a past DSAIA board member and was a board member, secretary and communication director for the NDSC where he conceived of and managed the We’re More Alike Than Different campaign.

  • Thu, October 03, 2019 8:45 AM | Anonymous member

    “Your advice is priceless … because you’ve already been where we are.”  “The conference fast-forwarded our group at least 5 years.” “Together is better.” “When our Executive Director left last year, we called DSAIA.” “We have made friends from numerous groups who are also members and they have freely shared advice, documents and support. We are so much stronger together!” “We saved $4,000 in the first year alone from the Member Rewards.”  “DSAIA is essential to our community.”

    These are just a few of the comments we have read or heard recently as DSAIA reaches out to members, partners and leaders around the country.

    Nowhere else will you find other people who have walked in your shoes and are so willing to share those lessons.

    So, in case you have been a little busy (ok—A LOT busy!) with the business of running your own Ds organization, let us remind you of the power of these connections:

    •  If you have questions or a concern of any kind or need help navigating the next steps for your organization or just want to know which other group already does the new program you are about to roll out, give us a call! We can help.
    • You can reach DSAIA at the same time and place as always: 701-354-7255 or via email here
    •  Become accredited. Today more than ever, donors look for accredited organizations before choosing a nonprofit organization to fund. Accreditation is evidence to donors that an organization is committed to nonprofit best practices, true accountability and serving its community. Donors need only view the rigorous standards that organizations must meet for DSAIA accreditation to know their funds are in good hands. Our application is online and there is no fee. We even provide you with the checklist to help you meet the accreditation standards.
    • The cornerstone of DSAIA: the 14th Annual Down Syndrome Affiliates in Action Leadership Conference Feb. 27-March--attend the only conference exclusively designed for the leaders of nonprofit, Down syndrome associations. Three full days of workshops on fundraising, board and staff development, new programs and outreach templates, networking and more. If you haven’t registered yet, do it today here!
    • And this year, for your convenience and cost-savings, Down Syndrome Affiliates in Action (DSAIA) and National Down Syndrome Society (NDSS) are thrilled to announce a collaboration between the DSAIA and NDSS National Buddy Walk® Organizer’s Conference. This collaboration will bring even more education and leadership-growth opportunities for affiliate leaders, advocates, and individuals dedicated to the Down syndrome community. In February 2020 in Orlando, Down syndrome affiliate leaders, whose organizations hold a Buddy Walk®, can attend both annual conferences during the same weekend in the same location.
    • February 27  -  NDSS Buddy Walk Organizer's Conference
    • February 28 - March 1 -  DSAIA Leadership Conference
    • And of course, this doesn’t even touch on our Leaders Circles (new ones will form in Spring 2020), the members-only library of shared documents and templates (hundreds!) as well as corporate discounts on insurance, event tshirts, etc. We’ll talk about those in our next blog post.

    See you in Orlando Feb. 27!

  • Fri, September 20, 2019 10:05 AM | Anonymous member (Administrator)

    Valued DSAIA Affiliate Members,

    After more than 9 years, Executive Director, Deanna Tharpe has decided to move on from the Down Syndrome Affiliates in Action and will step down as of September 20, 2019.

    Under Tharpe’s leadership the organization has grown into a national, respected resource for the Down syndrome leadership community.  “Deanna’s passion has produced growth and progress both for the organization and the community at-large.” said DSAIA Board President, Lauren Camp.

    “It has been a privilege to serve DSAIA.” Tharpe said. “This organization continues to lead the way in the Down syndrome affiliate community due to the dedication of the Board and the wisdom of our membership.”

    Tharpe will be joining the executive team of Global Down Syndrome Foundation as their Senior Membership Consultant. She is looking forward to continuing to serve the Down syndrome community in her new role. Tharpe will remain in a strategic advisory role with DSAIA for the next few months of transition. The DSAIA Board looks forward to working with Deanna through our strong and long-time relationship with Global.

    The DSAIA Board of Directors is excited to welcome Amy Van Bergen into the role as interim executive director. She will help us reach our membership and conference goals and brings a wealth of knowledge and energy to DSAIA. Amy has a vast amount of experience within Down syndrome and nonprofit organizations of all sizes. She is a native to Florida and happens to have a son with Down syndrome.

    DSAIA’s first priority is and will always be serving our membership, and through you, the Down syndrome community. During this period of having an interim director, the DSAIA Board will also be analyzing the organization’s current structure, mission and strategy.  We will look to you for feedback about why DSAIA is important and how we can strengthen programming to serve your ever-changing needs.  We invite you to join us for a Town Hall Zoom Meeting on Monday, September 23rd at 6:30pm Central Time. This will be an opportunity for members to ask questions, share input and engage with the DSAIA Board of Directors. If you are unable to attend, but would like to speak with our board President, Lauren Camp, please email or call 302-757-2303.

    Down Syndrome Affiliates in Action is dedicated to helping our members develop organizational capacity. We look forward to seeing you in Orlando for another amazing conference and hope to hear from you at the meeting on Monday. Thank you for all you do!

    Join the Town Hall Zoom Meeting on Monday, September 23rd at 6:30PM CT via this link HERE.  Let’s discuss: What is the biggest benefit to your organization from being DSAIA members? What do you want more of? How can we improve and better serve you?

  • Tue, August 13, 2019 7:44 AM | Anonymous member (Administrator)

    Guest blog author:  Kari Jones, President/CEO of Down Syndrome Association of Central Ohio, DSAIA board member, and sibling

    Today, over lunch, I drove by my brother’s house as I was heading to a meeting. Sometimes I just want to make sure everything looks “right” and it’s just kind of a habit since he lives so close now. When I passed by, a blue paper on the front door caught my eye. I immediately jumped to “protective mode” and had already made up my mind that whatever it was, it was probably bad because I didn’t see any similar notes on other houses on the block.

    As I parked my car and ran up the steps, lots of things were flashing through my head. Is it a mean note? Someone “marking” his house somehow? Someone trying to take advantage of him somehow? A neighbor writing that he needs to close his blinds?! (Note: If that letter hasn’t actually come yet, it’s undoubtedly on the way...  )

    I got to the door, looked closely, and realized it was an invitation to the neighborhood block party.

    I immediately felt several emotions, but mostly I just felt overwhelming happiness. All my life, all I have ever wanted for Alex is for him to have a community around him that makes sure to have him be a part of it. Not one that lives around him, but one that lives with him. One that includes. Today, in the neighborhood I hope he grows old in, it officially happened.

    Over his lifetime, Alex has had countless pieces of paper that meant something to him and to us as his family. Report cards, IEP’s, ISP’s, diplomas, paychecks... and many other things that represented the milestones in his life. It’s more than just milestones, though. These papers represent inclusion.

    It hasn’t always been glamorous, but I firmly believe that all of the years of hard work (my parents’ mostly) and pushing (I’ll take credit there... I’m the oldest! Isn’t that my job?!) which led to this blue paper being taped to the door today.

    Inclusion isn’t just a one-time decision. It isn’t just about school, or sports, or work. It’s raising awareness so others think “Hey, I should make sure to give him a note since he may not see it on Facebook like many of the other neighbors.” It’s a lifetime of choices that lead to someone’s acceptance. If we all do it, eventually maybe there won’t be overbearing sisters pouring their hearts out about what a big deal it was to have their brother with Down syndrome invited to the neighborhood block party. Wouldn’t that be awesome?

  • Wed, July 17, 2019 8:58 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    We have all been there. You leave a meeting and wonder why it was even necessary. What was the purpose?  Nothing was really accomplished anyway. And actually, it probably was a giant waste of your precious time. But it didn’t have to be. No, not at all. 

    Meetings are supposed to have purpose…and most do.  There is an agenda and lots of discussion. So, why do you leave feeling like nothing was accomplished? Maybe it’s because there were no decisions made, no action items assigned. Sure, some meetings are meant to be a way for staff or committees to keep the rest of the team updated. But if that is all that happens in a meeting, just mail that info in, right?

    If you are leading a team, here’s a couple of tips on how meetings can be a useful tool rather than a time-sucker:

    Take some time on the agenda.

    Rather than just a round-robin of departments, consider adding some bullet points under each category/department with action items from the last meeting as well as future deadlines and/or next steps in order to cover everything and keep everyone future-focused.

    Always add a discussion item to the meeting agenda.

    It doesn’t matter if it needs a true vote or decision made, but adding an item that needs input of the whole team means engagement! It can be a small detail or a large-scale idea. Whatever it is, the goal is to get the creative juices flowing…or thoughtful ideas shared. But here is the kicker…as the facilitator of the meeting, it’s your job to make sure that everyone participates in this discussion and that it doesn’t go on forever. So, keep a list of your team members and check off who shares.  Then encourage others who haven’t by a short prompt: “Sarah, what do you think about John’s idea?” Or keep talkers from monopolizing the conversation: “Jean, I want to hear what you have to add, but we haven’t heard from Sarah yet.”  And start your stopwatch on your phone to keep it all in check.

    Don’t leave the meeting without Action Items!

    I think this is the most important of all. After each discussion, make sure that a decision is made and that it is noted. “So, we agree that we are going to go with the purple shirts this year and Tom is going to check on pricing with vendors and report back to us at the next meeting.” There.  Now, write that down and create a deadline for Tom. It’s all about accountability and we are all adults here. You can always set a reminder for yourself to check in with Tom in 2 weeks to check progress, but that action item is already going to be listed on the next meeting’s agenda. And guess what? Two or three action items recalled at the end of the meeting and BAM…it feels like you guys accomplished something!

    Good luck at your next meeting!  Oops, I have to go! Yep, I’m late for a meeting!

  • Tue, May 28, 2019 8:12 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Some people only know me as the executive director of DSAIA. But once upon a time, I founded a Down syndrome association in Paris, Texas. I resigned in 2010, moved to North Dakota and was able to continue my journey in the DS community by becoming part of DSAIA.

    Two years ago, I moved back to Texas. Hanging out after a golf scramble, I had someone come up to me and ask “You probably don’t remember me, but I remember you.” After a little hesitation (I mean, I wasn’t sure where this was going), I asked her name. She related that she had a daughter with Down syndrome and 7 years before, I had come to her house for a new parent visit.  Whew… 

    I instantly remembered her and her daughter because that was the very last new parent visit I did before leaving Texas for North Dakota. She told me that she was struggling back then…very young with a baby, not to mention that the baby had Down syndrome. She said I stayed a long time and she appreciated it.  (Actually, it was my last visit so that was probably me being selfish.)

    She told the person next to me that I held the baby, fed the baby, and so on.  She looked at me and told me that the visit CHANGED HER PERSPECTIVE.  She showed me pictures of her now 7 year old daughter who is doing well and told me that I put Down syndrome on the back burner and helped her understand that this sweet little baby was a baby first.

    Now, about this time, I am tearing up (I am tearing up right now as I write this) and I am pretty sure a few others were around me. I don’t remember everything she said to me that night, but I walked away with the realization that even one interaction (a few hours or a few minutes) can make a world of difference in the life of another person.

    It also reminded me that not every area in the country has an active Down syndrome association to be able to make that difference in someone’s life. To be fair, it’s more than just existing…  Being a professional organization with proven programs and top-notch training is so important and that is why I LOVE what DSAIA does for organizations.

    But as you read this and think back about the many lives your DS organization has touched, think about what would happen if your organization didn’t exist. And I think I’ll leave that right here for you to ponder.

    (If you have a story to share, send it to We want to hear it!)

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

Get in Contact

Down Syndrome Affiliates in Action
PO Box 7192

Missoula, Montana   59802



Member Access

Click Here

Powered by Wild Apricot Membership Software