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  • Fri, June 16, 2017 8:28 AM | Anonymous member

    By Laura Hathaway, Down Syndrome Guild of Southeast Michigan

    Why become DSAIA accredited? Great question! You will be asking yourself this a few times during the DSAIA accreditation process. And, your reasons will change. We started with "because it looks really good to prospective DSGSEMI members, potential endowment funders, grant makers, and individual/ corporate donors". It makes a difference in their eyes when Down Syndrome Affiliates in Action, a well-respected national organization, recognizes you as having differentiated yourself among its members. In retrospect, that's just the tip of the iceberg. The real benefits go far deeper.

    Accreditation requires the thoughtful examination of every aspect of your organization from both a human and a business perspective. Are you doing the right things for those you serve in the right organizational way? It's a balancing act. One that will continue long after your initial evaluation. Perhaps, it is more accurate to say that "becoming accredited" is not a single event but rather an intrinsic change to the lens through which you view your organization and, consequently, to your future decision making.

    I have an outstanding board and ED. Really. I could not have asked for more committed or more brilliant traveling companions. Our year long accreditation journey required each and every one of them to bring "IT" to the table. Finance and insurance, human resources and organizational development, marketing and public relations, non-profit management and resource expansion, technology and security, and, advocacy in every sense of the word. That's the true value of the accreditation process.

    My passionate stakeholders seized the accreditation's opportunities to collaborate and to create a more sustainable DSGSEMI that thinks long-term as well as efficiently manages its day-to-day operations. That's the desire that initially brought them to the DSGSEMI. It's not a bad legacy either.

  • Thu, June 01, 2017 8:39 AM | Anonymous member

    Written by Deanna Tharpe, DSAIA Executive Director

    If your board meetings are so long that you fear you will lose board members because of them….then you have a problem.  Ask yourself these two questions:

    1. Are we meeting often enough?
    2. Do we (as a board) have THAT much business to handle?

    If your board meetings are spanning hours and you are meeting quarterly…maybe it’s time to move to a monthly or bi-monthly meeting schedule.  But more often than not, that is not really the issue.  That is when we move to the second question.  Do you really have that much business to handle….OR…are you perhaps spending too much time on committee business?

    Solution: Consider moving toward a consent agenda.  What is a consent agenda?  A consent agenda, sometimes called a consent "calendar," is a component of a meeting agenda that enables the board to group routine items and resolutions under one umbrella.

    As the name implies, there is a general agreement on the procedure.  Issues in this consent package do not need any discussion before a vote. Unless a board member feels that an item should be discussed and requests the removal of that item ahead of time, the entire package is voted on at once without any additional explanations or comments.

    Because no questions or comments on these items are allowed during the meeting, this procedure saves time.  Routine, standard, non-controversial, and self-explanatory are adjectives that well describe consent agenda items. The following are some examples.

    • Committee and previous board meeting minutes
    • Office reports
    • Routine correspondence
    • Minor changes in a procedure (E-mail is added as an acceptable method of communication to announce a change in a meeting schedule)
    • Routine revisions of a policy (Changes in dates or dollar amounts due to changes in laws)
    • Updating documents (Address change for the main office)
    • Standard contracts that are used regularly (Confirmation of using the traditional in-house contract with a new vendor)
    • Confirmation of conventional actions that are required in the bylaws (Signatory authority for a bank account or acceptance of gifts)

    As a single item on the agenda, the consent agenda is voted on with a single vote - to approve the consent agenda. The key to the Consent Agenda’s effectiveness, though, is that there is NO DISCUSSION of that item! That’s right. All those things that would have taken 2 minutes here, 5 minutes there, 1 minute here - they are off the table in one vote. The vote sounds like this:


    I move to approve the consent agenda.


    I’ll second that motion.


    There is a motion and a second to approve the consent agenda. All in favor, signify by saying “Aye.”

    That’s it. NO  discussion. And all those items that previously took ½ hour or more have now all been approved.

    Because there will be no discussion of these items individually, using a consent agenda requires that board materials be provided in plenty of time  - at least seven days - for board members to read them all. AND it requires that they read those materials!

    Seems easy enough, right?  But, wait, you say…..put our committee reports in the consent agenda and NOT have a 45-minute discussion on the color of our walk shirt?  Yes.  Let your committees do committee work!  See…there is usually the big issue.  So, 3rd question:  Are you micromanaging your committees?  If you are having 3-hour board meetings, you probably are.  Even in a small organization with no staff and small board, you have to create committees and then let them do their job.  The board provides oversight and direction.  (This is a whole different blog post in itself so look for it later!) 

    So, what if you see something in a committee report that makes you uncomfortable or you have questions about?  Questions are answered prior to the meeting.  If you disagree or feel that an issue requires further discussion, then pull that item from the Consent Agenda and put it on the regular agenda to discuss.  It’s not lock-down….it’s a tool to make your board meetings more productive.  Because you should be spending time on oversight and direction and not on the color of your walk shirts.  Trust me…you’ll thank me later when your board meetings drop to a reasonable time period and your board turnover drops.

    You can institute a consent agenda at your next board meeting. Use this consent agenda proposal.

  • Thu, May 18, 2017 9:07 AM | Anonymous member

    For the last two years I’ve served as board president of the Chesapeake Down Syndrome Parent Group in Baltimore. I transitioned into the position closer to three years ago from a burned-out president who was more than ready to move on. He asked me as vice president to take on more of the president’s duties so I could get acquainted with the roles and responsibilities of the position. When I started writing the agendas and leading the meetings, he started checking out. Don’t get me wrong, my predecessor is a great guy who led the board with fervor and determination for a long time, so I understand that when he got his chance to take a break, he made a break for it.

    At the time of his early departure, I was not intimidated or overwhelmed. I was ready to take the helm. I had ideas and a passion for the mission and charged to inspire our leaders and volunteers to do great things for Down syndrome.

    It’s two and a half years later, and I’m nearing my exit. I think I’ve been an effective leader, and I’ve had a lot of fun. But I’m also tired and want to move on to other things (like being director of membership and marketing for DSAIA). When I took the position in 2015, I knew I wanted to serve only two one-year terms. At the time, Chesapeake was an all-volunteer association and the commitment is extremely time consuming. I saw countless past board members burn out after their many, many years of service, and never return as a volunteer. This was not going to be me.

    I started to search for the next president at least a year before my time was up. Every board member who I thought could successfully transition into the president position received my best pitch. Not an iota of interest. Some board members (like the ones who said no to president) encouraged me – even begged – to stay on one more year. But I held true to my initial commitment. I didn’t believe anything was going to change in that year that would inspire one of our leaders to emerge as president. Plus I wanted to stay on good terms with my family.

    About two months before my term would end in June 2017, I made a last-ditch call to an incredibly qualified candidate: a board member who had only been on the board for less than a year but a long history with the Chesapeake Down Syndrome as well as in leadership outside the organization. I made my pitch. I was going to convince this guy no matter what that he was the best person for the job. There was silence. And he finally said “I was actually waiting for you to contact me about this.” Needless to say, he took the job.

    I’m just weeks away from stepping down, and I’m actively working with our incoming president to inform him of important issues, go over protocols, share some dirty laundry and of course answer his myriad of questions. I have committed to stay on the board as immediate past president, to further help our new president step up with energy and confidence as well as take on a couple of small board development projects. My previous transition experience has certainly influenced my involvement in this transition. My presidency has been marked by many accomplishments and met goals, but I know I could have been even more focused and effective if I had access to continued guidance and support of the past president.

    >>> Do you have your own transition story? Are you anticipating a transition at your association? Need to vent about a transition gone wrong? <<<

    On Wednesday, May 24 at 8 p.m. ET, DSAIA member leaders will be talking transition during the Topical Call: Dealing with Board/Staff Transitions. 

    REGISTER NOW to guarantee a spot on the call because space is limited. Topical Calls are for DSAIA Members ONLY and will not be recorded or be available in the listening archive.

  • Tue, January 17, 2017 10:48 AM | Anonymous member (Administrator)

    By Beth Kanter

    Originally published as a  guest blog post at MarketsforGood about how nonprofit data nerds can use data to set some new goals for 2017 to become healthier. Reprinted with permission from Beth Kanter.

    The passion that many nonprofit data nerds feel for our work is a double-edged sword. On the one hand, that fervor helps us to keep going in the face of difficult challenges, like analyzing a huge data set. On the other hand,  we can be so driven running data visualizations at the keyboard for hours that we don’t stop to refuel or even notice we are experiencing symptoms of burnout.

    In my new book, The Happy Healthy Nonprofit:  Strategies for Impact without Burnout, co-authored with Aliza Sherman,  we lay out the symptoms and causes of burnout and the remedies through deliberate self-care.  And while we discuss strategies for bringing self-care into the workplace or”We-Care,” we believe it is important to begin with the individual.

    The practices for self-care that we describe in the book are based on insights that we gleaned from putting the techniques into practice over the past few years. As someone who loves using data for decision-making, I found the health data generated by my Fitbit was highly actionable.  It helped me become aware of my unhealthy habits and pivoting to more healthy ones, despite what some vocal critics of fitness trackers say.

    If you are responsible for working with data at your nonprofit, it probably one of many other responsibilities on your plate.   So, where can you start to make a noticeable change in the way you work and life to become more healthy?

    Start with getting enough sleep.

    According to the CDC, insufficient sleep is a public health problem.  Don’t fool yourself by thinking you can sleep when you are dead or that cheating yourself out of a good night’s sleep by working into the wee hours.  Sleep deprivation can lead to an increased risk of chronic diseases such as diabetes, stroke, high blood pressure, heart disease, obesity, and poor mental health, as well as early death.

    When you don’t get enough sleep, it is like showing up to work drunk.  Would you analyze surveys after tossing several shots of Tequilas?

    How much sleep does your body actually need? Is there a magic number? The amount of hours per night varies from person to person and is different based on age. The National Sleep Foundation, a champion of sleep science and sleep health for individuals, undertook a comprehensive research study to answer the question of sufficient sleep and provides evidence-based guidelines on how much sleep you really need at each age.  Drum roll, please… Adults need between seven and nine hours of sleep per night.

    While there are a variety of different gadgets that you can use to track your sleep,  I use the Fitbit Charge 2.   And while the trackers can’t determine if you really are sleeping, it records the total time asleep, number of times restless or awake and total time restless based on your body movement.  So, remember it is only a guide.

    I logged my sleep hours, but I also kept a journal to record my mood, ability to concentrate and personal productivity.  While these subjective measures, I discovered that my magic number of sleep hours about 7 hours and 45 minutes.

    The value of this exercise was that it inspired me to rethink my routine about bedtime rituals.   I realized that I was in front of my computer monitor, trying to squeeze out one more email or just one more bar chart.  And, that staring into a monitor right before bed did not make it easy to fall asleep quickly.  In fact, the “blue light” from our computers or mobile phones is known to disrupt your melatonin levels and delay the onset of sleep.

    I started with a better bedtime ritual for myself that including meditation and other calming activities which allowed me to settle into a less agitated state to get some rest. Having my sleep data in hand allowed me to set a sleep schedule and stick to it – and my Fitbit also sends me notifications of when I should start my bedtime routine.

    I started with working on getting enough sleep each night.  What I discovered is that once I was able to achieve my optimal number of 8.25 hours per night, I felt a lot better and had much more discipline to start to build other healthy habits – such as daily exercise.

    In terms of fitness, simply adding any type of movement in your day can invigorate you and could save your life. As Nilofer Merchant points out in her popular Ted Talk, “sitting is the smoking of our generation.”   Again, my Fitbit was really useful in helping me to become aware of my habits.

    I started with tracking my baseline activity level: about 2,000 steps a day. Seeing this data forced me to rethink how much time I was spending on my rear end in front of a monitor staring at a dashboard.  I wasn’t only sedentary most of the day but I was even using her computer keyboard as a lunch tray.

    I started off with modest step goals, and added steps incrementally each week, 1,000 at a time, all the while monitoring my progress on Fitbit dashboard.  It inspired to think about ways to get more steps in during day — take a walk at lunchtime  – and wow add another 2,00 steps.

    Each week, I kept upping my goal by just 1,000 steps until I got to 10,000 and beyond.   Not only was I able to drop weight and improve my health biometrics like blood pressure and cholesterol numbers, but I discovered that walking helped me manage stress and improve my ability to think clearly.  I also found walking was a great time to reflect on what the data means – a brief walk does wonders for improving your pattern analysis.

    Recent studies show that it is important not to sit for prolonged periods of time because this is linked to higher incidences of diseases.    Therefore it is important to move for a few minutes each hour during the day.  My tracker now comes with a feature that will notify me every time I need to do those 250 steps.  I have this notification not to be a distraction but as a useful reboot of my brain to refocus my concentration – and I am avoiding potential health problems.

    If 2017 is the year for you to start to become a happy and healthy data nerd, the process might sound familiar.   Identify a goal, track your progress, and reflect on how to improve your results.

    Learn more about self-care for nonprofit leaders by joining us for the upcoming webinar "Who's Helping the Helpers? Self-Care for Affiliate Leaders" on January 19th.

  • Sat, January 14, 2017 12:30 PM | Anonymous member (Administrator)

    By Baloo Van Bergen

    You know those jokes about the retired old guy driving his wife bonkers? Well, I am here to give you the dog-gone truth about my recently-retired Girl and all her groaning about missing #DSAIA2017. In fact, it’s been a downright CAT-astrophe, as far as yours truly is concerned.

    Who am I, you ask? Why, I am but a simple, handsome (yet pawsitively humble) Portuguese Water Dog named Baloo and my Girl is Amy. Amy retired from the DSA of Central Florida in April 2016 and we have been leading a life off the leash ever since.

    Back to me and my complaints. When I hear her moaning about missing Cincinnati this year, she sighs about it being the first DSAIA conference she will skip since 2007 B.B (Before Baloo.) Fortunately, I distract the Girl often by barking at killer squirrels in my backyard…and sometimes, I distract her by barking at nothing at all. Between all that barking, squeaky toy enticements and full body massages (mine, not hers), here is some of what she will miss most:

    • Nonprofit with Balls author Vu Le (Did someone say balls? Tennis? Soccer? I love ‘em all!) My Girl says that every nonprofit professional should subscribe to Vu Le’s blog and be ready in your chairs first thing Friday morning (Sit! Stay!) because this presenter will make you think and laugh.
    • Getting in on the ground floor of the latest research or grant opportunities such as those presented by Global Down Syndrome Foundation. My Girl says nonprofit leaders almost never have the chance to meet in person with executives like Michelle Sie Whitten to find out what they are really looking for in applications…it’s a FUR-bulous chance for DS groups of any size.
    • The plethora (is that some kind of amazing new kong toy I don’t know about???) of topics and workshops ranging from prenatal outreach to DSWorks employment programs to managing board/staff/volunteers. Every topic, every expert, for every sized DS organization.
    • The people…the friends, the leader groups, the mentors. This seems in-CAT-ceivable to me. Afterall, I am sure that I am enough to meet all my Girl’s needs. But I have heard her talk about: the power and passion of Jawanda Mast preaching about advocacy or inclusion, the insights and laughter she’s gained from Rob Snow as well as nuggets of dog chow (maybe she said wisdom but that doesn’t make sense) that she’s gained from the likes of Anne Mancini, Heather Bradley or Jim Hudson. Running a Down syndrome support group can be a lonely business, especially for those without their own Baloos. My Girl says this is where you can meet and share with the best of the best.

    So, don’t fur-get to register for DSAIA2017 which will be held dually with the Buddy Walk® Conference Feb. 23-26 in Cincinnati, Ohio. And if anyone wants to get the Girl out of my fur for a few days, please invite her to attend with you because this retirement thing has been RUFF on me.


  • Wed, January 04, 2017 9:28 AM | Anonymous member

    Every week, I find myself discovering another really cool online tool that helps be do my job better and more efficiently. Here's a list of my favorite online tools of 2016:


    Canva makes graphic design easy for even the most design challenged. It uses drag-and-drop tools and a huge library of stock photos, fonts and even design templates. I designed a some infographics like a pro this year. There's no way I could have tackled that feat with Publisher or InDesign. Best of all its free!


    I'll never go back to PhotoShop. PicMonkey makes it so simple to adjust your photos anywhere online. Especially useful for the super-amateur photojournalist who just needs to crop out a photobomb or resize a picture for Instagram. It's been a saving grace for me editing images for the DSAIA newsletter.


    How many hours do your volunteers work? How many hours are you working? It's probably more than you think and with Toggl you won't have to guess again. This free online app lets you track your time on multiple projects for multiple clients, and runs a report at the end of your desired time period.  If time is money, think about all those in-kind donations you can report.


    Evernote is one of my favorite tools ever. Gone are the days of sticky notes and numbers written on the back of an envelope. It all goes in to Evernote. I've been using it for years to keep everything from notes during a conference call and my husband's Chipotle order to scans of important documents and webpages I want to save for later. I've got the notes synced on my phone, tablet and computer so I can access them pretty much anywhere.


    Basically big budget technology at nonprofit prices. Nonprofits need to run efficiently, so don't let steep price tags block you from your best work. Register for an account and your nonprofit has access to the most coveted software and productivity tools in business. There's hardware too - so get rid of your 2001 dinosaur and buy a refurbished laptop for next to nothing.


    Sprout Social makes keeping up with social media marketing so easy. Post your messages and news on one platform and it distributes to multiple social media sites. You can also schedule posts and save drafts for posting later. In 30 minutes, I can schedule a week's worth of content to Facebook, Twitter and LinkedIn.


    My newest love interest. Quik by GoPro lets you create and edits video set to music using your own photos that you can share with everyone you know. Simply select the photos you want, add a cover and titles if you want, choose your music and presentation style and you're done. Professional and fun - it let's you make a splash of your event photos, show off an amazing or recognize a volunteer's contributions - and it all can be done from your smartphone.

  • Fri, December 16, 2016 2:54 PM | Anonymous member (Administrator)

    Massachusetts Down Syndrome Congress (MDSC) has built an employment initiative that engages employers and opens doors for good, meaningful jobs for the self-advocate members in their community. "Your Next Star" was launched two years ago and is a clarion call for employers to diversify their workforces by including people with Down syndrome and other disabilities.

    MDSC Communications Director Josh Komyerov and Executive Director Maureen Gallagher will co-present a session at DSAIA 2017 which will cover the benefits of a diverse workforce, innovative approaches to hiring people with disabilities (including customized employment opportunities), examples of successful companies/employers and approaches that lead to success. Special emphasis will be paid to the range of jobs that people with disabilities can work. "We look forward to sharing our expertise so other organizations can understand the dire nature of the current situation and ultimately build their own employment initiative to make a real difference in their communities," said Komyerov.

    More incredible sessions geared toward teens/adults in the Down syndrome community are also on the schedule including:

    Learn more about these and other great sessions offered at the DSAIA Leadership Conference in February 2017.

  • Tue, November 08, 2016 9:39 AM | Anonymous member (Administrator)

    By Rick Lent, Ph.D
    Originally published on Meeting for Results

    Structuring A Respectful Meeting In A Contentious Situation…

    Here are five tools that are particularly helpful in structuring a productive conversation when you expect conflicting views. You can plan to use most of these tools in advance of the session, but any of them can be implemented “in the moment” when a discussion threatens to get heated. See the links to earlier posts for more explanation and examples of the tools mentioned here.

    Contentious meetingTools to Build More Balanced Feedback. The tools I call 1-2-All and PALPaR can be used in combination with Three Reaction Questions to create a more measured, balanced discussion. 1-2-All is helpful because asks participants to reflect first and then share their thoughts with one or two others before speaking to the whole group. These first two steps create a structure in which each person is more naturally able to gain some insight into their own and other’s perspectives. I find that 1-2-All can keep a discussion from being “stolen” by one impassioned participant. PALPaR, particularly used with Three Reaction Questions, enables a balanced hearing of the feedback, followed by a later, more thoughtful response that integrates what was heard. It avoids setting up the back-and forth of question/response that can verge on becoming a verbal dual.

    A Tool for Working with Both Sides of an Issue. Forces Review can turn an unproductive debate into an acknowledgement of both problems and possibilities. It engages the group in a constructive dialogue about how to improve the possibilities of success while recognizing the difficulties. (I will describe this tool in detail in an upcoming post.  For now, see the Meeting for Results Tool Kit for more information on how to use this tool.)

    A Tool to Use in the Moment. One more tool can be used in the moment a potential conflict arises: Practical Sub-Grouping. This tool outlines a process designed to structure a productive exchange when one or two people speak out against the prevailing direction of some discussion. As a leader, you can use this tool very transparently. No one should feel that you are manipulating the direction of any debate. You simply form several sub-groups to talk with one another about their views (not about why they dislike some other view) while others listen. Then you ask the whole group to identify what they conclude from having listened to this sharing. (See the description of Practical Sub-Grouping in the Meeting for Results Tool Kit for more information on how to use this tool.)

    These and another 27 tools are described in my “job aid” for anyone working to lead better meetings — Meeting for Results Tool Kit: Make Your Meetings Work.

    Learn more about how to lead an effective meeting for your organization in our upcoming webinar with Rick on Wednesday, November 16th at 1 pm ET/10 am PT. Register today: Leading More Effective Board Meetings

  • Fri, October 14, 2016 4:36 PM | Anonymous member (Administrator)

    By Steven Shattuck, Chief Engagement Officer at Bloomerang

    This post originally appeared on the Bloomerang Blog on October 3, 2016.

    The consensus among social media practitioners is that only a portion of your messaging should be promotional.

    For example, the rule of thirds states that only 33% of your content should be promotional, while the80/20 rule limits it to just 20%. It makes sense, doesn’t it? After all, who among us wants to constantly solicited to on social media?

    So if the majority of your social media postings should be conversational, how do you go about generating those interactions?

    The key is listening.

    Here’s why listening is the ideal starting point to engaging new and prospective followers in a meaningful conversation:

    1. You Can’t Broadcast Until You Have a Community

    If you’re boasting only single or double-digit follower counts on your active social networks, your posts are the equivalent of shouting into a void, especially when you consider that algorithm-controlled networks (like Facebook and Instagram) limit the visibility of your posts to only about 10% of your followers.

    And shouting into a void isn’t the best way to gain followers.

    One of the best ways (not the only way) to gain followers is to monitor ongoing conversations, and engage with them if it makes sense to do so. Listen for mentions of your brand name, your cause, your events or any other topic that is on-brand for you.

    2. Listening Gives You an Authentic Reason to Engage

    Savvy nonprofit marketers will identify social media users in their community who are either influential, in a position to help (geographically close, civically engaged, etc.) or both.

    Unfortunately, there is a tendency to simply spam these people by bulk-tweeting to them or tagging them in promotional posts. It’s no surprise that these messages are often ignored. Social media is not the same as mass email marketing.

    Once you have identified those you want to have a conversation with (either through listening or direct research), engage them individually either around a conversation already in progress or by initiating a new one that is unique to just them.

    This kind of interaction is much more authentic than blasting out the same message to a large group of people and hoping one or two responds.

    3. Broadcasting En Masse is Not Effective

    If you are using a tool that lets you schedule and distribute content en masse to multiple social media networks at once, you may want to reconsider.

    Sending the same update to all of your networks at the same time is universally regarded as a bad idea. Each social network has its own unique community, style and cadence expectations. It’s also counter-intuitive to the whole idea of being “social.” When you’re at a party, do you go up and talk to people individually or do you shout from the corner of the room and hope someone hears you?

    But, most importantly, this isn’t a function that you should look for in a donor database. It’s not your donor database’s job to broadcast to social media. It is its job to measure engagement from social media (Twitter is arguably the best network for this because of how open and personal the interactions are).

    Does your nonprofit organization engage in social listening? Why or why not? Let me know in the comments below!

    For help with generating the rest of your content, be sure to download our free eBook: The Three A’s of Nonprofit Social Media.

    Want more great insight from Steven? Join us for a FREE webinar October 26th at 1  pm ET/10 am PT. Register now!

    About the writer: A prolific blogger and speaker, Steven curates our educational content as Bloomerang's sales and marketing lead. In 2015, he co-founded Launch Cause, a nonprofit accelerator and co-working space located in Indianapolis.

  • Mon, September 12, 2016 9:55 AM | Anonymous member (Administrator)

    By Deanna Tharpe, Executive Director of DSAIA

    I had the amazing opportunity to watch Mark and Scott Kelly (yes, the astronauts) speak recently at the annual meeting and exposition for the American Society for Association Professionals in Salt Lake City. Of course, it was great to see these two incredible brothers talk about their journey from kids in New Jersey to leaving the earth’s surface. However, their message gave me some key takeaways that I have to share because they are so relevant to what we do on a daily basis as Down syndrome association leaders.

    One of the first nuggets of wisdom from the talk was that we have to focus on what we can control, not what we can’t.  Helping to lead a Down syndrome organization is an incredibly difficult job, no matter which part of the job is actually yours. And that is why we need to remember to focus on the jobs that are ours – those that we can control. If you are in charge of New Parent/Family Outreach, focus on that and do the best job you can do. Maybe your area is legislative advocacy. Do your research, keep informed and keep connected to national organizations. It’s what is within your control.

    Oh, but, come on.  What if you are the Executive Director? Or the board president with no staff? What if you’re in charge of everything? Wait. No, you are “responsible” for everything. That’s where others come in (volunteers, board members, staff) so that they can be in control of something. And you – you can assist them in their jobs by giving them the training and resources they need to do them successfully.

    But, let’s delve deeper into this because it affects everyone in leadership positions. Sometimes I think all of us tend to let things that are beyond our control take over our focus. We can’t control the weather on walk day but we can control planning for that eventuality. We can’t control the fact that our major sponsor that loved our organization so much that they gave each year generously ended up selling their company and the new owner is a little less generous. But we can control diversifying our funding streams and being aware of changes in our community. We can build relationships or at least begin the process.

    I think about Mark Kelly’s heartfelt story about the day his wife was shot. He couldn’t control the situation but he could control how they handled it as a family. And it reminds me that we as leaders of Down syndrome organizations can take a page from many of the families we serve. A family can’t control whether their child is born with Down syndrome…but they certainly can focus on what they can control. And part of that is turning to a valued and trusted resource for support throughout their child’s lifetime. And that is what a DS leader can control….the quality of the services they receive.

    So, let’s take a moment to buckle in, get focused on what we can control and blast off. The sky is not the limit anymore, it's just the beginning of the journey.

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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