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  • Tue, September 18, 2012 9:39 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Sharing your smile when you see a sad face: GOOD. 

    Sharing your college party pics on Facebook: BAD.

    Sharing your laugh: GOOD.  

    Sharing your political thoughts at this time of year: might be BAD.

    Sharing your sandwich with a hungry friend: still GOOD.

    Sharing your tissue: GOOD….unless it’s used:  BAD!!!!   

    Sharing your knowledge with other leaders: THE BEST!!! 

    Sharing (for the most part) is good. It is why Down Syndrome Affiliates in Action was started. It is what we do on a daily basis. And the annual leadership conference in February 2013 is the best time to share since we’re all in one location, face-to-face, ready to learn, and ready to share.

    And that is where you come in…it’s time to share. Share, you say? What do I have to share? Well, take a look around. What is your organization doing well? Hmmm…maybe you could share how you made that happen.  What is your protocol, your process, that makes it work? Started a new program? Or maybe you took another group’s program idea, made it fit YOUR membership and/or size of group…that is a great presentation just WAITING to happen.  Or perhaps there is a professional in your organization (staff or board member) that has nonprofit, leadership, or other type of knowledge that has benefited your organization in the past? Maybe that type of information would benefit others?

    The possibilities are endless….because we have miles and miles to go in the sharing department. I feel like we’ve just gotten started! Pass the word – we’re looking for a few good men and women and topics!  The online speaker submission form is up now…you’ll find it at  It’s simplified from last year and only asks a few basic questions. But don’t wait too long…the time for sharing is ongoing but the time for scheduling speakers is limited! See you in Cincinnati February 21-24, 2013 for lots of sharing!

    (Pictured above: Robbin Lyons and Edie Howard sharing a moment of smiles at the 2012 DSAIA Leadership Conference in DC.)


  • Tue, September 04, 2012 10:06 AM | Anonymous member (Administrator)

    By Sterling Lynk, Executive Director, Madison Area Down Syndrome Society


    I am about to share with you something that should embarrass any leader of an organization that claims to represent, advocate for and support people with Down syndrome.


    I have any aunt, on my dad’s side, with Down syndrome.  My dad’s clan is huge and they are the models of warmth and caring.  As an only child, my cousins are my brothers and sisters and I was blessed to spend many of my  childhood summers with that family, even though they live a couple hours away.  Since I was around that side of my family so often, I also spent a fair amount of time around my aunt.  In fact, my aunt is my sole personal connection to someone with Down syndrome.


    Obviously, there is nothing embarrassing about having a large loving family and their certainly is not anything embarrassing about an aunt who also happens to have Down syndrome.  What is embarrassing is that I really don’t know my aunt at all despite essentially growing up with her.  In fact, I know five things about my aunt. Here they are:

    1. Her name.
    2. She is my aunt.
    3. She has Down syndrome.
    4. She is non-verbal and does not live independently.
    5. She used to like playing basketball.

    But, that is not the worst of it.


    About 12 years ago, I spent New Year’s Eve and Day with that family and I stayed in the same house as my aunt. After a night of New Year’s Eve fun, I decided to watch some TV before heading to bed. About 2:00 am,  my aunt woke up and sat next to me. She wanted something but I couldn’t figure out what but I am pretty sure it wasn’t an emergency. Then we just sat there. I did not try to talk with her and I was very uncomfortable. After a while, to my relief, she just went back to bed. Sitting in chair I sit in today, this is very embarrassing.


    The truth is at that moment, and any other moment I had to get to know my aunt well, I was scared. Here is what I am pretty sure was going through my mind. “What should I say…What if I do something wrong…What if I say something wrong…What does she understand…How am I supposed to interact with her…?”


    What was my problem?  Ignorance.


    This would not be the biggest deal if it was just me, but it is not. We live in a world that is ignorant about Down syndrome.


    One my board members shared this story with me:

    “When I was on vacation I had lunch with a friend from college. He was surprised to learn that I had daughter with Down syndrome. He also told me that he worked with a woman with Down syndrome but he never talked to her unless he had to. When I asked him why, he told me it was because he didn’t understand how he is supposed to talk to her and he is afraid that he would say or do something wrong. Until that day, he was afraid of people with Down syndrome.”


    I think this story illustrates the number one challenge facing us leaders and advocates within the worldwide Down syndrome community. And, this is why I have taken it as a personal responsibility to help my community shed their dim view of Down syndrome, and instead see that individuals with Down syndrome are like other people in that they can, should, and are contributing meaningfully and significantly to their communities and the greater world.


    Sometimes I am told I am overly optimistic about what people with Down syndrome are capable of.  I disagree if by "overly optimistic" they mean that I should not expecting children with Down syndrome to grow up, be as independent as possible, do well in the world, and generally be a human being.  For example, I received a call from a family looking for advice on how to "cure" with medication a child with Down syndrome grieving at the death of one of her parents.  I thought grieving as a normal human reaction to death. 


    Am I being overly optimistic when I think it's normal for a forty-something self-advocate as he tried to enjoy his beer, while at the same time one of my colleagues was shocked that he could drink?  Or, how about the time when a mom shared that she was concerned that her six year old with Down syndrome started to safely get her own snack?  I think that is something to be celebrated.


    I really believe that it is not enough to just challenge the vision of the communities we live in.  We need to continue to challenge ourselves.  So, am I being overly optimistic when I say that if organizations, advocates, self-advocates and other leaders that make up our movement are not developing people with Down syndrome to robustly and effectively advocate for themselves, and if we are radically shifting the understanding of the greater world around us, then we are probably not doing right stuff?


    You tell me.


    (Sterling Lynk is a guest contributor to DS Group Therapy, has a background in nonprofit leadership, and currently serves on the board of DSAIA. He has promised to contribute more in the future, especially regarding how this story has progressed.)


  • Tue, August 28, 2012 8:57 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Connecting leaders…we do it each year at the annual conference. I try to do it on a weekly basis when our members need to talk personally with another group leader on a specific subject. However, it’s hit or miss and it’s the misses that constantly make me lose sleep. “I wish that I had an hour to just talk with others in my position.” If you have said those words, I know that you are going to love DSAIA’s new Leaders Circles. What are Leaders Circles? Leaders Circles are groups of five Down syndrome group leaders from similar-sized organizations and in similar positions who meet monthly to address common challenges, exchange ideas and share solutions.  Circles will meet in monthly joint work sessions from October through April. 

    Leaders Circles can help you:

    • Network with colleagues who face similar challenges and opportunities
    • Experiment with new ideas before “taking them public”
    • Achieve personal goals
    • Keep up with developments in your field
    • Get support and coaching from peers
    • Take action and learn

    With the help of Jane Page-Steiner of JPS Nonprofit Strategies, DSAIA’s pilot project will include two Leaders Circles focusing on Board Presidents and Executive Directors. Future plans are to extend circles to other board/staff positions once the pilot programs are completed. The Circles are more than just a chat session…a facilitator works with each group and meetings are focused and productive as well as confidential.

    Fees for the program are $250, but DSAIA members are able to take advantage of this valuable tool at no charge. There is an application process for interested organizations, allowing DSAIA to ensure the greatest benefit to each participant. Applications will be accepted through August 31, 2012. DSAIA will assess and contact approved applicants to attend the first meeting/orientation in late September. Regular Peer Circle Meetings will begin in October. Interested? Download the application today by clicking here.


  • Tue, August 07, 2012 12:52 PM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Over the last couple of weeks, I’ve gotten a lot of questions regarding the Baby Bootie or Buddy Bootie Program. This program focuses on engaging new families in your annual walk using targeted gifts and invitations. Originally presented in a 2010 webinar entitled Walk the Walk which featured First Downs for Down Syndrome’s Amy Stoll, the program has since brought other organizations success. Ups for Downs’ of Northeast Ohio’s Laurie Kowalski presented the program’s success story in May’s Six in Sixty webinar. Bringing in $17,000 from “new baby” teams is a huge testimonial to the effectiveness of this program.

    The questions I’ve received have ranged from “What is it all about?” to “Where do I buy the shoes?” Let’s answer some of those questions here and then you can promise to send me YOUR success stories afterwards:

    • What is the program?
      Baby shoes are purchased for those new members (born since the last walk) and sent in a nice package complete with Walk Invite.
    • Where can I see the details of the program?
      To see the short clip of the program from “Walk the Walk”, you can visit the DSAIA Repository where we have set up a Buddy Bootie Folder under Events/Walk Materials/Fundraising. To watch USOD’s success story and how they adapted the program, go to the DSAIA Webinar Archive and search for the Six in Sixty webinar from May 2012.
    • Is there an easy way to recreate what other groups have done?
      Sure – we’re DSAIA, remember? In the Buddy Booties folder, you’ll find examples in picture form as well as a template from USOD. If you’ve done the program, please send in your documents as well so we can add them right away!
    • Where do we buy the shoes?
      You can purchase baby shoes anywhere…but DSAIA has partnered with Bobux, a quality distributor, to give you great shoes at a great price. DSAIA members receive a 50% discount off regularly-priced shoes (this comes to about $14.25 a pair) but some discontinued styles will be available for even less! (A DSAIA member reported ordering their shoes at about $7 a pair! You can’t find those deals at the discount stores!) Find the Bobux offer details at or download the flyer!

    So, keep the questions coming! Keep the ideas coming! And don’t be shy about telling us how you utilized DSAIA resources – we want to know!

    Note: If you are not a member of DSAIA, you (unfortunately) will not be able to access all the resources listed here. can give us a call to find out more about ALL of the resources that DSAIA membership brings to your organization! Contact DSAIA at or 701-425-7129.

  • Tue, July 24, 2012 2:28 PM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    “Do you have a local Down syndrome group in your area?”

    If I asked this question one time over the past few days, I must have asked it a thousand. If you walked by the DSAIA booth at the National Down Syndrome Congress Convention, you probably heard it. We were working hard (along with NDSC who handed out surveys at their booth) to get information about existing and non-existing groups in the U.S. I realized it is a “loaded question”. 

    And here’s the breakdown:

    25% - “We have a group in our area.” (After a moment, I find out that the group is a member of DSAIA and has filled out the survey.)

    35% - “There’s a group in our area but we’re not very involved.” (I know…this bothers me too.  Why are they not involved?)

    25% - “There was a group in our area.  We were a big part but now our son/daughter is older and I think they kind of fell apart.” (Is this the saddest thing you ever heard? What about the new parents in the area???? )

    15% - “There is no group in our area. We wish there was.  We kind of thought about starting one but didn’t really know where to start.” (We spent a long time talking after this remark.)

    Each time I asked the question, it led to a discussion about their group or lack thereof. I realized this weekend that even though I thought (going in) that the Gaps in the Map Project was wonderful, I had no idea how much it was needed. I realized that it is more important than ever that we spread the word about the project to everyone on our email list, our Facebook page, etc. We have GOT to move forward on this project and the survey is the first step in securing access to support for families from coast to coast.

    Won’t you take a moment to complete the survey, share the link and support the project? Need more information? Go to or find the survey at

  • Tue, July 17, 2012 6:59 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    I’m headed out tomorrow to one of the most exciting events in the Down syndrome community…the National Down Syndrome Congress Convention. Yes, I’m going there to work but that doesn’t mean that I am not looking forward to this trip with great excitement. (It’s one of the most fun parts of my job!)

    The first NDSC Convention I attended was in 2006 and I have only missed one since. I laugh because I have friends from that first convention that I KNOW I’ll see there this year (and every year) plus all the wonderful new friends I’ve made since that first trip. They are right…it is like a big family reunion (lots of cousins you don’t know but once you start talking you realize you’re family). The greatest experiences I have had have been when we took a self-advocate with us.  Some have been humorous, other enlightening and still some a little emotional. But you know I wouldn’t trade one of them.

    These days, you’ll find me in the exhibit hall during the convention….manning the DSAIA booth. I love that I will get to talk to representatives from groups all over the world. I love to hear about their organization, their challenges, and their successes and then be able to tell them about Down Syndrome Affiliates in Action. Most are parents so they either have their child/adult with them or have a great pic in the back of their name badge. (Oh, yes, I’ll have mine in there as well.  I mean, my kid is super awesome, come on!)

    So, if you are attending the NDSC Convention in DC this week, come by and see me in the exhibit hall. We’ll be talking about Gaps in the Map and give you an opportunity to fill out the survey if you haven’t already plus win some great prizes!

    And now, I have to cut this blog short.  Ok, so I’m not completely packed…  Come see me in DC!

  • Tue, July 03, 2012 1:30 PM | Anonymous member (Administrator)

    By Amy Van Bergen, DSACF Executive Director and DSAIA Vice-President

    People often think that because I work at our local Down Syndrome Association that my family or my child with Ds receives all sorts of perks. Because of that perception, the truth is quite different and our board has set policies to ensure that there is no favoritism for relatives of staff or board members.

    Top Ten List of What My Kid with Down Syndrome Doesn’t Get Because I Work for the local DS Group:

    1. His/Her photo on the cover of the Annual Report (or anywhere inside either!)
    2. A starring role in last year’s fundraising fashion show
    3. An opportunity to serve as our Step Up for Down Syndrome or Buddy Walktm Grand Marshal
    4. A chance to win a free laptop (as part of a giveaway to all of our school-age students with DS in a 7-county area)
    5. Free tickets to the local amusement park/children’s museum/nature center
    6. Discounted or free registration to any of our children’s programs (in fact he doesn’t even get to attend them if space is limited and/or I am involved in running the program.)
    7. His/Her photo or quotes in any of our awareness materials (new parent welcome packets, newsletters, website, social media, advertising banners, etc.)
    8. A chance to present at any of our association-sponsored workshops or conferences (even though he prides himself and is quite accomplished as a self-advocate and public speaker.)
    9. A chance to compete in any of our contests for individuals with Down syndrome (such as last year’s art contest, drawings of chance, talent show, etc.)
    10. To serve on our board of directors, self-advocates advisory board, or staff.

    (Amy Van Bergen is the Vice-President of Down Syndrome Affiliates in Action as well as the Executive Director of the Down Syndrome Association of Central Florida. We thank her for her tongue-in-cheek –yet honest – portrayal of the endless sacrifices that both parents and children make on a daily basis to serve the larger DS community.)

  • Wed, June 27, 2012 1:57 PM | Anonymous member (Administrator)

    I just spent six months with some great people. Well, technically, it was only six evenings but they were memorable. I’m talking about the DSAIA Board Development Series. It ended last night with Jane Page-Steiner’s Strategic Planning session. After 9 hours of training from nonprofit professionals, what did we learn?

    1.       Board members may feel that they are often under-utilized, over-worked, and that their responsibilities don't match what they thought they were to do.

    2.       Board orientation is best conducted within two months of recruiting a board member.

    3.       The role of the board chair in fundraising is to create and support a “culture of fundraising”.

    4.       When a board member engages in the tactical day-to-day work of the non-profit (i.e. planning a walk, delivering a program, etc.), that board member is not serving in that moment as board member.  Instead, she or he is a normal volunteer and under the supervision of the Executive Director if there is one.

    5.       Finance, Governance and Executive Committees are the most common found in nonprofits.

    6.       A strategic plan can help an organization stay focused and on a common plan. Some funders often require it now for funding requests.

    And that, of course, is the tip of the iceberg. In all, 127 DSAIA members enrolled in the training. Those who have completed the full training and their worksheets from each session will receive a Certificate of Completion in Board Development from Down Syndrome Affiliates in Action. For those who did not enroll or who did not attend each session? In less than a week, all sessions will be available for ALL of our affiliates in the webinar archive. While the DSAIA board catches up, I encourage your organization’s board (and staff) to take advantage of this resource as well.

    The six session topics are:

    • Board Development 101
    • Board Orientation
    • Fundraising and Your Board
    • What is the Role of Your Board?
    • Shared Responsibility and Accountability
    • Strategic Planning with Your Board

    So, in the words of one of my favorite Texans, “turn out the lights…the party’s over.” Thanks, Willie, but we’re going to continue to give our members access to some of the best series out there (think Grantwriting!) and remind them to get in there and enjoy an hour or so of great information and training WHEN and WHERE they can! If your organization is a member of DSAIA and you would like to view this series, please contact us for more information at 701.425.7129 or today!

  • Tue, June 19, 2012 8:54 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director (and “Wearer of Many Hats”)

    So, you knew when you took a job at a small nonprofit Down syndrome organization that your job would entail a myriad of “hats.” When you are the only staff member or one of very few in an organization, it’s really a given, isn’t it? I read an interesting article yesterday asking the question “if you are doing so much, how do you do anything well?” and it really hit home. Even for board members, committee chairs, or general volunteers…this is a great question and one that I’m sure enters your mind at least once a week.

    I had a little practice being a “jack of all trades” during my many years in broadcasting. I spent a lot of my time working in two or three different areas (on-air, production, promotions, sales, management, etc.) but I never really got a REAL taste of wearing multiple hats until I left the private sector to take a job with a DS organization. The only staff member, I found myself trying to multi-task and still excel at everything I put my hands on. (FYI – this can make for some sleepless nights.) Now, studies show that multi-tasking leads to doing NOTHING well and some of us have learned the hard way.

    How to overcome this conundrum? Planning. Just because you need to do 5 different jobs in any given week (programs, marketing, fundraising, etc.) doesn’t mean that you can’t plan ahead to try to do the best job you can. And for those balancing your job (or volunteer job) against family life, it’s important that you spend a little time on your “plan of attack” so that you are more successful (and able to sleep) at the end of the day. Don’t worry – it’s not that hard to make your plan.  It’s just hard to stick to!

    There are two ways you can do this: divide up your day into different “jobs” or divide up your week into different “jobs”.  For example, Monday is your day to plan your social media posts or work on marketing materials for your upcoming events or programs while Tuesday is your day to spend on fundraising like sponsorship materials or grant funding requests. If you have all day to devote to the organization or are one that needs some break-up in your day, divide your day up into smaller “hats” so that you have some options.  Of course, you will always have to devote some time to checking email or putting out fires, but a more structured plan that allows you some time for emergencies will result in a less-stressed, less-harried you in the long run.

    If you are interested in some time-saving organizational tips, check out our Divide & Conquer webinar in the DSAIA Webinar Archive. Be the Jack-of-All-Trades that your organization needs you to be and stop worrying about being Master-of-None! With a little advance planning, you can still be productive and successful in your strength areas without sacrificing the other two dozen that must be done.

  • Tue, June 12, 2012 10:16 AM | Anonymous member (Administrator)

    By Allison Wixted, DSAIA Board Member, Gaps in the Map Chair, DSA of Greater Richmond Executive Director


    Does this sound like your story?


    When my second child was diagnosed with Down syndrome, I didn’t have anywhere to turn for advice. The only person I knew with DS was my 2nd cousin and he was my mother’s age. Things had changed. My obstetrician was supportive because she lived next door to someone with DS as a child. I went to the internet. I bought literature at every bookstore. I longed for someone to talk to about my child with Down syndrome. What was I to expect? What were the developmental signs to look for? More importantly, I just needed someone to talk to who understood.


    You're not alone. I know that when our daughter with DS was born, I had an insatiable desire for accurate and up-to-date information, along with support from other parents. I also know that I'm "one of the lucky ones," in that I was fortunate enough to tap into a supportive local DS affiliate shortly after her birth. It was an incomparable gift and literally saved me from the panicky thoughts flying through my head at the time like "I'm alone," "No one understands," "I have no idea what to do next," and "I don't think I can do this." But what if I hadn't gotten connected to my local affiliate, or if there simply wasn't one in my area?


    That's where the "Gaps in the Map" project comes in! For families who don't have access to a local affiliate, we are determined to change that! In partnership with NDSC and NDSS, DSAIA is spearheading the "Gaps in the Map" project to ensure that EVERY family has access to a local DS affiliate! To do that, we need your help! Whether you're a member, board member, or on staff of a local DS affiliate, we need you to help us with the first step in determining where those gaps are! We need you to add your local DS affiliate to our "master list" so that we can determine where the gaps are. Then, over the next 2 years, our "Gaps in the Map" Task Force will be working hard to find solutions to "fill those gaps."


    How do you add your local affiliate to our "master list?" Simply complete our BRIEF survey at so we'll know which area(s) your local affiliate serves and who you are! Don't assume that "we already have your information," or "someone else from our group will do it;" take just a moment to complete the survey. If you need motivation, just remember how you felt when your child with DS was born and you connected with and were sustained by your local DS affiliate.


    Thank you for completing the survey and supporting this important project!  We also encourage you to check out all the project in detail at ( Be sure to "Like" the "Gaps in the Map" Facebook page! Most importantly, talk up the project with your friends in the DS community across the country!


    If you have any questions about the project, feel free to contact me, Allison Wixted, (DSAIA "Gaps in the Map" Task Force Chair) at or Deanna Tharpe, DSAIA Executive Director, at


    Together we can ensure that ALL families have access to a local DS affiliate!


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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