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  • Mon, July 18, 2016 8:46 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    I’m headed out in a few days 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 Orlando this week, come by and see me in the exhibit hall. I have some cool giveaways PLUS nonmembers can get access to one of our webinars FOR FREE! Ask me how!

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

  • Wed, May 18, 2016 4:17 PM | Anonymous member (Administrator)

    Come on, if you haven't been to a board retreat that fit all three of those, you are my hero! But let's not give up on board retreats...they can be magical. They can be productive. And they can be orchestrated by YOU.

    On May 26, we will be joined by Joan Garry.  She is a leading nonprofit consultant who works with boards and staff members as a strategic advisor, crisis manager, change agent and strategic planner.  She also has a blog for nonprofit leaders at and a podcast on iTunes called Nonprofits Are Messy.  Her webinar topic will be How To Create A Five Star Board Retreat.

    Clearly a five star retreat begins with five star board members.  Here are links to a few posts Joan has written on the topic of building a great board.

    How To Build A Great Board

    Nonprofit Board of Director Assessment Tool

    Great Interview Questions for Nonprofit Board Candidates

    Don't miss out on this webinar! Register now at:

  • Tue, April 19, 2016 1:54 PM | Anonymous member (Administrator)

    I had the pleasure last week of participating in the "National Down Syndrome Society Buddy Walk on Washington" event. While it's not my first time to attend (by any stretch), I did notice some distinct differences from my first visit years ago. I think the differences lie in the number of attendees, the self-advocates and the education of the participants. Let me elaborate.

    While the number of people coming to advocate on behalf of Down syndrome is always impressive, the number this year was an increase. First of all, I saw many more families with young children. Seeing all these families getting involved early in legislative advocacy is nothing short of a boon for our future. ABLE has passed and while there is still plenty of work to be done to improve the existing law, seeing an increase in attendance was surprising to me. It is an election year, but I just felt that wasn't the underlying reason. I think people in the DS community have seen the power of their presence on Capitol Hill and they want to keep that momentum going.

    Oh, the self-advocates! Not only were there many, but they were amazingly involved and professional. While none of them were my offspring or came from my local area, I couldn't help but feel pride when seeing them in the halls of the Congressional office buildings or hearing the stories of their visits. 

    Maybe it's just the level of involvement I saw across the board. The advocates I spoke to were knowledgeable about past legislation and about how Hill visits work (even if it was their first time attending). More than that, they asked thoughtful questions about legislation they didn't quite understand. I can't imagine that comes from anything other than training and communications. I suspect the DS-Ambassador program can take a lot of credit for that.

    Overall, it felt empowering to be part of such an effort by the community. Hearing the stories of the state efforts, the triumphs of their visits and seeing the long lines of Congressional members waiting to praise our effort made for a great trip.  Watching a rainy morning turn into a beautiful spring afternoon (hmmm...did we do that?) was icing on the cake. Thank you, NDSS, for all you do!

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      • Thu, April 14, 2016 8:36 AM | Anonymous member (Administrator)

        It's National Volunteer Week! I know most of us recognize and thank our volunteers throughout the year for their hard work and contributions to our organizations. Of course, many of you might also be posting a big "thank you" on your social media networks as well this week. 

        What this week brings to MY that this is a GREAT opportunity for nonprofit leaders to evaluate our volunteer programs and improve them. For example, what is your recruitment process? Is it different for each event/program or do you have an overall strategy and process for recruitment? What happens when you bring in a volunteer? One of the best resources we (at DSAIA) can offer is Jennifer Bennett's extensive webinar on all of these issues entitled "The New Volunteer Manager's Toolkit" housed in our Webinar Archive on the DSAIA Member Resources section of our website. Jennifer, with VolunteerMatch, has presented at several DSAIA conferences and is just an incredible resource for nonprofit leaders. 

        Another great resource I have to mention is the entire volunteer section of the Resource Library. You'll find examples of volunteer applications and communications (like newsletters). Also in that section is the slide deck of Jennifer Bennett's presentation on creating a training program for your volunteers. And if you do want some ideas on how to thank your volunteers, check out the Event/Fundraising section in the Webinar Archive to learn about some "Creative Ways to Say Thanks!" which includes a volunteer section. 

        If you do decide to post on social media about National Volunteer Week, do us a solid and include us in the post @downsyndromeaia so we can help you share the message. 

      • Thu, April 07, 2016 10:31 AM | Anonymous member (Administrator)

        Guest Author: Ellen Bristol, President/CEO of Bristol Strategy Group

        When we were kids, I used to envy my cousin Judy no end. When we were in high school, she was never without a date on the weekend, while I sat home feeling sorry for myself. Judy was pretty and cute, but not stop-traffic gorgeous; not a cheerleader; not wealthy; she didn't drive a snazzy car, but she always had boys lining up around the block, dying to spend time with her. And no, she didn't put out!!!

        Years later, I finally asked her what her secret was. Know what she told me?   "I never worried if I was good enough for them. I just wanted to know, is this guy gonna be good enough for me?" 

        What a lesson.  I've never forgotten it. And here's why you shouldn't either.

        • You're already "good enough" for them.
        • Your organization and its mission and programs are already "good enough" too. 
        • And it's "their" problem if they haven't figured it out - and your problem if you haven't told the world.

        Let me explain.

        Judy - who still looks exactly like she did at age four and in high school  - was and is entirely self-confident. She knows if you're OK with yourself, others are as well.  Now this post is not a lesson in self-esteem, it's about fundraising, so let's talk about why Judy's experience is so relevant. 

        First, avoid the tin-cup mentality. it's amazing how often people raise money using the tin-cup approach: "Give us money because we need it!" "Help now! Because we need money!" "If you don't give us money now, little Johnny doesn't get his puppy!" "We're really in a bind and we're counting on YOU to get us out of it!" Not very appetizing to the guy on the other end of the so-called "ask." If you were selling something, it would come across like "buy from me or I'll kill you."  If you've ever had this done to you, you would hate it. If you've ever done this, please bow your head in shame.  

        Judy never felt she had to beg for attention, or worry about the other person's reaction to her. Instead, she spent her time getting to know the other person, producing rapport and interest. It came naturally to Judy; she's really gifted that way. But these are skills you can learn - and you must if you're going to be successful at fundraising. 

        Second, understand your financial and social value. You wouldn't have been able to get your organization off the ground unless you had something to offer. Your programs would be unused, your clients would not exist, your board would not be there for you. If you're still tin-cupping around your fundraising, ask yourself why you are not convinced of the value of your own organization.

        And finally, stop asking where the donors are hiding.  Cousin Judy never spent any time obsessing about where the "good" guys were hiding out, unlike what far too many of my straight female friends have whined about over the years. There is no secret stash of "good" donors out there, no magic door behind which they are hiding.  They're already available, and most likely looking for your organization, even if they don't know it yet.  If you've got a meaningful mission, good programs, and effective ways to let the world know it, donors and potential donors will find you. 

        Want to learn more about my cousin Judy, and how she influenced my approach to fundraising? Ready to start a fundraising revolution in your nonprofit? Then you'll want to read my book Fundraising the SMART Way.


        But...there's another option for Down syndrome associations! Why not enroll in a training program that will lead you, teach you, help you design the most effective fundraising program your organization needs and deserves? Learn more about Fundraising the SMART Way during a free webinar on Wednesday, April 20th?

        Register today! 

      • Fri, February 12, 2016 11:51 AM | Anonymous member (Administrator)

        By Susan Black, CFRE
        Allene Professional Fundraising

        (This is the third in a 3-part series about one-person fundraising shops.)

        Last time we talked about how to avoid burn-out in a small shop by focusing on the first of the two most important aspects of your development operation: your board.  This month we'll focus on donor communications, the second part of the approach. 

        As the manager of a one-person shop, you will need to make sure that your thank you letters go out, that your data is clean, that you know your donors, and that you keep in touch with them on a regular basis through phone calls, letters, and other communications. This is by far the best use of your own time beyond managing the board and the committees. Failing to keep up with these tasks will inevitably lead to lost donations.  Part of your job is making it look like everything is calm on the surface even if you are paddling furiously under the water!  Here's how to tackle this challenging feat:

        1. Set aside time each week to accomplish these activities.  Find time in your week or better yet, a few minutes each day,  to work on some of the "scut work" of correspondence, filing, and database entry.  Don't let these things pile up or they will become overwhelming.  
        2. Invest in a good database.  The last thing you need as a one-person shop manager is to wade through volumes of spreadsheets and lists trying to find donor information.  Instead, make the investment in a good, low-cost web-based database system.  You don't need anything fancy but you do need something that has built-in capabilities to collect the information you need, to sort and manage that information, and to provide relevant reports.
        3.  Hire a good assistant. I realize you might not be able to hire someone but find a part-time person if you can.  If not, you may be able to find willing volunteers on your board or through your local senior center, place of worship, high school, or college.  Get creative and get the help you need.
        4.  Find a reliable printer with a good in-house designer and do as many of your publications online or electronically, as possible. I can't tell you how much time and money I have saved by finding a printer that is located in a small town (their prices are far less than the printers in my city), and that has a good, capable in-house designer.  This vendor provides high-quality work and is like having a "virtual" graphics department. I've also learned to do my own e-newsletters and other simple publications like postcards and flyers using desktop publishing and on-line resources.  It's worth your sanity and your budget to seek out a good printer and learn these programs yourself.

        Susan Black is a respected fundraising consultant and one of the many great presenters you'll find at the upcoming 2016 DSAIA Leadership Conference. Learn more about her at

        See Susan's sessions as well as the full agenda of offerings here

      • Mon, February 08, 2016 9:10 AM | Anonymous member (Administrator)

        By Susan Black, CFRE
        Allene Professional Fundraising

        (This is the second of a 3-part series about one-person fundraising shops.)

        Last time we talked about the importance of passion for development professionals who are in a one-person shop.  I mentioned that sometimes passion may be the only thing keeping you going!  Lack of passion may lead to burn out and burn out starts when we feel overwhelmed.  That's easy to feel when you are by yourself.  To avoid burnout when you are a one-person show, focus on two things: your board and your donor communications.  We'll tackle the latter next month. For now, let's take a look at your board.

        In essence, you will need to make your board your de facto development staff.  Start by making sure there is a functioning development committee on the board.  This group will be able to help you make key decisions and set short and long-term goals; they can also run interference with the rest of the board to help your initiatives take hold.  Managing this group will not be easy, but hopefully you can hand-pick the members and build individual relationships that will help you get the support you need.  

        The second step is to ensure that all fundraising projects have their own committees, including your annual fund. The committees do not have to be comprised entirely of board members.  In fact, it's a great way to recruit potential board members by introducing them to your organization on an event or project-based committee.  Then your job becomes managing the people on these committees and empowering them to undertake all the main fundraising projects of your year. Ideally, work with each special event committee beginning a year in advance of their event and help in whatever ways they need, but do not do all the work yourself!  Empower them to do as many aspects of the work as possible.  This can be tricky because many committees believe it's their job is to tell you how to do yours! But with the help of a champion on each committee, by giving the members specific tasks and deadlines, managing them through reminder phone calls, and holding them accountable for their assignments, they should rise to meet the expectations you have set. Sometimes it will seem like it would be easier to do the work yourself, but it will be worthwhile in the end when the group takes ownership of the project and you see your base of support grow.

        Susan Black is a respected fundraising consultant and one of the many great presenters you'll find at the upcoming 2016 DSAIA Leadership Conference. Learn more about her at

        See Susan's sessions as well as the full agenda of offerings here

      • Wed, February 03, 2016 6:38 AM | Anonymous member (Administrator)

        The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood, by Jen Jacob and Mardra Sikora

        Review by Anne Mancini, Executive Director and Trisha Oyos Stibbe, Parent

        Down Syndrome Alliance of the Midlands, Omaha, Nebraska

        Full disclosure! We know – and love – Mardra, and her son Marcus Sikora.  

        Anne: When I schedule a meeting with Mardra, I block out some extra time, because I know we are going to find more to talk about than what’s on our agenda. Marcus and I are in a book club together. I got to see these two in action when I attended an author reading of Black Day: The Monster Rock Band. They are joyful and fun to be around, but Mardra isn’t afraid to tell the hard truths. She is not apologetic about her choices and opinions. She is a well-educated and passionate advocate for Marcus and his peers. So I knew before I opened the book that there would be a lot of Mardra’s heart in it.

        Trisha: Claire was only a few months old when I first met Mardra and Marcus. My husband and I listened to this power duo talk about advocacy and were so inspired. Seeing a young adult with Down syndrome being fully engaged and immersed in the “real world” gave both of us such hope about Claire’s future. After speaking to Mardra, my passion for advocacy grew, and I know it was due to her setting such a strong example.

        Anne: The very first thing I appreciated about The Parent’s Guide to Down Syndrome is the advice to seek out a local Down syndrome association. As the director of the Down Syndrome Alliance of the Midlands, I have the privilege of watching my families welcome each other to the community and share stories and support. This book will provide that sense of community for any parent not quite ready to dive into a local organization or who unfortunately does not have one geographically accessible.

        Trisha: My husband’s work causes our family to move quite often. In the next three years we will live in three different states. Finding the Down Syndrome Alliance of the Midlands was finding “my people.” There was no prefacing feelings, I met people who understand that sometimes laughing is the best medicine, and we compare and recommend physicians, therapists, hospitals, etc. Having a local support system has been invaluable. When I am about to lose my mind over this new life, I talk to the other moms, go to the get-togethers, and yes, even cry. Because these friends get it like no one else does. 

        Anne: Just like most organizations, this book features the voices of parents of all walks of life, with children of all ages. There are stories about hearing the news, breastfeeding, having more children, becoming a community advocate, and sending your child to college.

        Trisha: Reading the birth diagnosis stories took me back to the day Claire was born. I thought, “So, it wasn’t just us?!” Other parents had experienced the same joy-combined-with-grief that so few understand. I was able to identify with all of those stories, good and bad.

        Anne: In our community, we know that when faced with a diagnosis of Down syndrome, there are many things about which a new parent doesn’t even know yet what to ask. I was pleased by the explanation and discussion of topics such as the blue and yellow colors, school acronyms, and guardianship issues. Because it is presented chronologically, the information can be digested in the early days and referred to again later, or taken in bit by bit as the child approaches those transitions. 

        Trisha: The format of this book was easy to read and digest, given the vast amount of information. I read it all in one sitting and dog-eared several pages. While Claire is only 9 months old, it was still invaluable to read some stories of those with older children with Down syndrome. I don’t think one can ever be too prepared.

        Anne: Trisha and I are proud to recommend this book to parents of children with Down syndrome. We think wherever a parent might be on the journey, a connection to information and other parents’ stories is extraordinarily helpful and can be found in these pages.


        The book is available at Barnes & Noble (in stores and online) as well as Amazon. For special offers, click here 

      • Thu, January 28, 2016 9:49 AM | Anonymous member (Administrator)

        By Susan Black, CFRE
        Allene Professional Fundraising

        (This is the first of a 3-part series about one-person fundraising shops.)

        Recently I went out of town with my husband.  We chose a get-away that would allow me to see and experience a bit of his new passion: white-water kayaking.  After seeing the incredible amount of preparation, packing, traveling, unpacking, etc. (not to mention risk-taking!) he went through to participate in his new hobby, I exclaimed that the only way he could want to continue was if he was extremely passionate about the sport! The same is true for fundraising professionals who run one-person shops. Passion is a key attribute of any fundraiser, but especially those who are running a one-person shop.  In fact, passion may be the only thing keeping you going!  

        So how do you keep your passion when you're toiling alone?

        Reconnect with the source: Take time in your day-to-day work to interact with those you are benefitting. Nothing will reconnect you better than seeing the faces of little children enjoying school, families receiving a meal, or patrons enjoying the artwork. 

        Plug in to a community: Find others like yourself by joining AFP or another professional group and prioritize attendance.  Learning new things about fundraising and sharing your struggles with others will make your situation seem so much more manageable when you feel like you're not alone.

        Never Stop Dreaming of What Could Be: For years I kept a little paragraph on my bulletin board with this heading and it always inspired me.  Although I don't recall the source, this great sage reminds us that as fundraisers we are "dream brokers", "helping others realize what their resources could accomplish if only they were directed toward those noble ends." The author encourages us to "use your position to dream immeasurable dreams [for what your organization can accomplish], then share your enthusiasm for what could be with those who can turn them into reality." Good advice, indeed.

        Susan Black is a respected fundraising consultant and one of the many great presenters you'll find at the upcoming 2016 DSAIA Leadership Conference. Learn more about her at

        See Susan's sessions as well as the full agenda of offerings here

      • Mon, January 25, 2016 8:56 AM | Anonymous member (Administrator)

        By Dana Lightman, Ph.D.

        You don’t need to hear from any expert to know that change is a constant element in our lives today. Leaders must navigate ongoing changes in their organizations, ranging from policy and personnel to technology and finances. And it is the leader who sets the stage for how these changes are received by staff and integrated into the organizational culture. To make matters even more stressful, the changes that are taking place are more complex today than they were in the past, and they are happening at an accelerated pace. In the past, when change occurred, it was more relaxed. You had time to adapt your feelings, thoughts and behaviors. You didn’t have to work at adjusting your perspective, because adjustments happened naturally. You didn’t have to spend so much time integrating new information and concepts. Integration seemed to just occur automatically.

        In today’s world of fast-paced change, you can’t afford to be passive. You need to be proactive, intentionally taking charge of your responses to change.  And helping others move from initial negative reactivity to more positive perspectives can create a smoother transition in the organization. For example, these types of thoughts about change would put anyone on a downward spiral of frustration, anger and resistance: “I don’t want to deal with this new policy.” “Not another new computer program I have to learn!” “Our old manager was so much better.” 

        The first step in being proactive is to notice and pay attention to thoughts that drain your energy and create anxiety or negativity.  The key is to shift your focus to the positive aspects of change.  Use these questions as a guide:

        • How will I grow from this change?
        • What negative pattern can I tackle and overcome?
        • What can I learn from this change?
        • What gains could I make that will help me down the road?


        The next time you face a change, coach yourself and others to notice the feelings of loss, uncertainty and discomfort that are the normal, initial reactions to change.  But don’t stop there.  Actively embrace this change as an opportunity for discovery, insight and mastery.  While change requires adjustment, when you take charge of your perspective, it can also lead to growth and empowerment.


        Dana Lightman is one of the many incredible presenters at the 2016 DSAIA Leadership Conference. Dana will be delivering the Saturday keynote address. Learn more about her at

        To see Dana and other speakers in person, go to


      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

      About DSAIA

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