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  • Tue, December 27, 2011 10:17 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    What a great holiday!  I realize many of you have packed it in for the year, spending time with your family and putting everything on “auto-pilot” through the 1st.  Although it sounds like a great plan, you may be allowing funding to slip through the cracks.  Did you know that donors are looking for last-minute donation opportunities for 2011?  Tax deductions are a big part of this.  What else could be responsible for Network for Good processing 10% of annual donations in the last two days of the year with a significant spike between Noon and 7pm on December 31st?

    Here are some simple year-end fundraising tips... you just need:

    •·         A good email list

    •·         A good email program

    •·         Donation button capability on your website

    Update your website with Holiday News!  Post pictures from holiday celebrations (featuring your members with Down syndrome) on your site!  Provide an update on needs you hope to fill in 2012 on your website.  Make it short and concise because your reader’s attention is short as well.  Think Bullet Points!  Put that featured holiday message on the homepage – not buried somewhere several clicks away.  Remember that short attention span?

    Did you know that online giving grew 14% last year despite a difficult economy?  Is your ‘Donate Now’ button (remember, you are supposed to have one?) hidden or too small?  Have your webmaster correct that today!  Remember, make it easy to donate! 

    Use FaceBook for more than Words with Friends.  Write some FaceBook updates with pictures today but schedule them to post throughout this week.  It’ll be good to show up on your fans NewsFeeds all week – when they are playing around on FaceBook (probably on Words with Friends).  Use Hootsuite or TweetDeck to help you schedule them NOW for posting LATER.

    Send a brief (BRIEF) email to everyone before New Year’s Eve with a reminder that there is still time to make their 2011 donation – and it’s the last chance to get a tax donation this year.  Reinforce your key message of what you want to accomplish in 2012 using the bullet points you developed for your website earlier.  Have the ‘Donate Now’ button prominent in your email communication.  (Don’t make them go to your website to donate….you have to make it EASY!!!)

    And after you have done a great job strengthening your year-end fundraising, be sure and view some of the great archived webinars in the DSAIA Repository including:

    Creative Fundraising Strategies for 2011(still great ideas for 2012!)

    Grant Writing for Dummies (a 6-week video course to get you started!)

    Happy Fundraising and Happy Holidays from DSAIA!!!


    Note:  DSAIA webinars are available to members only.  If you are part of a member group and do not have access to our Members Only section, please contact your organization's staff/board president to remedy that.  If you are not a member of DSAIA and would like to find out more, contact us today! 
  • Tue, December 20, 2011 9:41 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Have you ever seen something new and think that this is going to be huge?  (No, not like my hips after the holidays.)  I mean….you know that something is going to be a hit before it ever launches.  Oh, is that how insider traders feel?  Eek…that’s even a worse visual, huh? 

    I’m talking about a new online social community that DSAIA has made possible for our conference attendees in 2012.  I couldn’t GET more excited about what we have in store for our conference-goers this next year.  Remember back in the good ol’ days when you wagged around your conference program because that is where you marked up your schedule?  That is all a thing of the past.  How about looking at the schedule (presenters, descriptions, the works) ahead of time in the comfort of your living room and then downloading your choices onto your laptop or mobile phone or maybe just (do people still do this?) printing it out!?!

    How about (and this is the part I LOVE) scheduling your Capitol Hill visits with other groups in your state online so that everyone has the correct information and changes can be made incredibly easy and without so much as an email?  Yes, that is what our new online community can do for you.  I just keep thinking how much easier it would have been in 2009 if we had this amazing tool!  Thank goodness we have it now…and it comes FREE as part of your DSAIA conference registration.

    Now add on to all of that….a way to contact presenters ahead of time, to talk to exhibitors and sponsors about their product and to engage in conversations with other attendees before you even arrive in DC.  Yes, you can do all of that.  What about searching for other attendees who are interested in Diversity Outreach or Education?  Yes, you can do that.  What about connecting with other board presidents or treasurers or staff?  Yes, you can do that too!  Plus, we connect to your social media accounts!

    I almost forgot the most important part – the community will stay up until time for the next conference!  Meet someone at the conference and lose their card or forget their name or organization?  Find them online! 

    The tentative schedule is up now but we are waiting on you…your interest in breakout sessions will help us double-up on topics that get the most interest. 

    You spoke, we listened.  Enjoy. 

    You can view the community by visiting including the tentative breakout schedule. (But get registered…because that is where the fun begins!)

    Special thanks to Mac Macsovits of Mile High DSA for his never-failing knack of pointing me in the right direction!  You’re awesome!

  • Tue, December 13, 2011 8:53 AM | Anonymous member (Administrator)

    By Mark Leach, DSAIA Board Member

    In the past few years, a number of parents have published memoirs on raising their children with Down syndrome. For this holiday gift-giving season, though, I wanted to call your attention to Amy Julia Becker's A Good and Perfect Gift.

    Some of you likely are familiar with Amy Julia and her daughter Penny from Amy Julia's years of blogging. Her posts have been passed around through social media and e-mails precisely because of her compassion in dealing with issues that for many are difficult to express. This same caring attitude runs throughout her wonderful memoir about her pregnancy with Penny and the next few years when Penny welcomes her little brother.

    For me, the title A Good and Perfect Gift was perfectly apt. Her memoir was a gift of reminding me of the many memories I have of my own daughter's early years. Reading about expecting Penny, Penny's birth, early intervention therapies, and celebrating Penny's accomplishments brought forth corresponding memories I have of Juliet at that age--memories that become more distant and need to be remembered with each passing year.

    Amy Julia also writes eloquently on the subtle (and not-so-subtle) pressure mothers of children with Down syndrome experience in subsequent pregnancies. Society and many in the medical community do not want to see that prenatal testing can be stigmatizing to parents of children with Down syndrome. This is seen particularly when, in subsequent pregnancies, parents are regularly asked whether they've "made sure this time" by having prenatal testing. It is important for Amy Julia to have written about this pressure to have testing.

    It is also important that Amy Julia wrote so lovingly about her experience raising Penny. She writes of being changed by Penny, and how too many do not have the opportunity to share the "good and perfect gift" that a child with Down syndrome can be. She resigns herself to trusting "that the story of our family would speak for itself." Her memoir furthers the telling of that story, even in its structure of having 3 parts with a total of 21 chapters. The Beckers' story is one that is common to many of us fellow parents, but uncommon, even "abnormal," for most in society. And that is why giving Amy Julia's new book A Good and Perfect Gift makes for a perfect gift this holiday season. It will introduce your loved ones to a story that will change them, and our society, for the better for individuals with Down syndrome.

    To find out more about Amy Julia Becker, visit her website at .  You may order the book from Amazon by clicking on the following link:

  • Tue, December 06, 2011 10:07 AM | Anonymous member (Administrator)

    By Joe Meares, DSAIA President

    I travel a great deal with my “real” job. This gives me the opportunity to meet with many DSAIA members and to help recruit new members. In conversations with ED’s and board presidents, there is a common theme, regardless of the size of the organization; “We need our board to become more engaged and more involved”.

    This theme resonates with both volunteer driven organizations and organizations with staffs of 5, but, board members understanding and effectively performing their duties is certainly more crucial for organizations that are entirely volunteer driven or have limited staff. 

    In 1999, I was recruited to my first nonprofit board, a trade association representing two states. I moved up the ladder and was serving a term as president in 2007. By then I was serving on four nonprofit boards and I’d received a total of two hours of board training. I seldom missed meetings, did what I was asked to do within my skill sets (or comfort level), but, “the job” didn’t come with an instruction manual. In total, I’d sat through 500 hours of board meetings, 50 hours of strategic planning, but, only 2 hours learning my job as a director of the organizations.

    I now see board service as a privilege and volunteer service doesn’t mean “as time allows”. Too often I hear stories of board meetings when less than half of the leadership is attendance.  I also believe it’s not fair to ask someone to serve on a board without training them for the job and responsibilities. This certainly wouldn’t work in our careers.  

    Board training is crucial if your organization has a working board and necessary even if your board’s primary function is governance and direction.  “Continuous improvement”, especially with board leadership, should be a part of our organizational culture, not an ideal stated in a seldom viewed document.

    Recognizing a problem is the first step in solving a problem.  DSAIA’s mission includes offering tools for continuous improvement and board development and training ranks high on the list of products we are routinely asked to provide.

    The DSAIA Training and Education Committee have addressed these requests. Beginning in January, DSAIA will begin a six-month board training series featuring professionals from the nonprofit community presenting on topics such as Board Roles & Responsibilities, Fundraising with Your Board, and even Strategic Planning with Your Board. 

    I hope each ED will encourage and each president will insist ALL of your board attends this valuable series. Ninety minutes a month for six months is a small sacrifice to better execute the responsibilities of the JOB required of board service.

    I already know of 15 individuals who will be attending this series; the board members of your trade association!

    To register for the six-month series (sessions are scheduled on the third Tuesday of each month at 8 pm Eastern), visit the DSAIA website at  The Board Development Series is open to DSAIA members only. 

  • Tue, November 29, 2011 10:09 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Over the past month, I’ve watched lots of my Facebook friends post daily to “give thanks” for their families, their friends, their health and other (sometimes very creative) things.  When you are named in one of the posts, it just makes your day.    It makes you feel that you have had an impact on someone’s life.  That is how organization leaders should approach thanking our donors and volunteers….by reminding them of the impact of their donation whether it be money or service. 

    As the DSAIA Education and Training Committee works to complete our “Creative Ways to Say Thanks” webinar scheduled for December 7th, we are constantly reminded that showing your gratitude is more than just saying the words.  It is SHOWING your donors, volunteers and board/staff that their contribution was important, that it made a difference.  Impact.  Everyone wants their time, money or talent to have an impact.  So, tell them.  Show them.  Help them to understand that their donation to your walk helped to purchase a New Parent Packet for a new family.  Help them to understand that the hours that they spent serving or cleaning at the annual picnic meant smiles on the faces of the families you serve.  Explain that each minute spent in that board meeting equates to quality programs that benefit individuals.  Make it personal….make it real. 

    To take a slide out of our upcoming webinar: “the deepest craving of human nature is the need to be appreciated.”  So when you are thanking your donors seven times and trying to do it more creatively and without spending their donation….remember to make it real for them.  Show them their impact.  And, whatever you do, do NOT forget your volunteers, your board or your staff!  We’ve got some great ideas lined up for you in the upcoming webinar.  After all, as we near the end-of-year push for last-minute giving, what better time is there to say thanks?

    The “Creative Ways to Say Thanks” webinar is scheduled for Wednesday, December 7, 2011 at 1 pm Eastern and is available for DSAIA members only.  To register, click here.

  • Tue, November 22, 2011 8:19 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Many years ago at an inclusion conference, Paula Kluth and I were talking about how wonderful it is to see all the parents get “re-energized” by attending.  She said something that has really stuck with me.  She said that we all needed to come “drink from the well” every once in a while.  I wrote an article short after that for my local organization’s newsletter about “drinking from the well” in regards to parent attendance at conferences, meetings and such.  I think it also applies to affiliate leaders as well.

    Coming back from the NDSC convention in San Antonio, I was recharged with enthusiasm from seeing old friends, meeting new ones and extolling the virtues of DSAIA to anyone who would listen.  And I looked around and saw many parents getting that much-needed drink from the “well”.   For affiliate leaders, that thirst may go beyond parenting issues, health concerns and educational strategies.  It may morph into thoughts about the sustainability of their organization, making the most of their resources, and reaching as many in need as they possibly can. 

    That is why Down syndrome support group leaders will find the DSAIA “well” so refreshing.  Bringing your leadership to Washington D.C. in 2012 will mean more to your organization’s continued success than you can imagine.  For those who attend each year and continue to bring more and more of their board and staff, it’s obvious to them that they are investing in their organization when they pay that registration fee.  What about you?  I can’t tell you what you will take home from the conference…I can only tell you that my first DSAIA conference was a real eye-opener.  I attended alone, but I made sure that I brought board members with me the next year.  I knew that I could not obtain this type of knowledge or amount of resources from any other source.  It was almost overwhelming. 

    As groups begin to register for the conference and we open our online community, I think it is time to take the cover off.  So, I invite you to come drink from the well February 29 – March 3, 2012 as groups from all over the country meet to learn, to share and to connect.  Now, if you’ll excuse me….we’re busy filling up the well for you. 


    To register or find out more about the upcoming conference (which includes NDSS' Buddy Walk on Washington) visit today!

  • Tue, November 15, 2011 6:35 AM | Anonymous member (Administrator)

    By Mark Leach, DSAIA Board Member, DS-Louisville Board Member

    Today, at 12:30 pm Eastern, the Down Syndrome Affiliates in Action longest running task force will hold its monthly conference call. We invite you to consider joining if you want to play a role in addressing the challenges our community faces with the advances being made in prenatal testing.

    "IDM TF" stands for the Informed Decision Making Task Force. Founded and chaired by DSAIA Board Member Mark Leach after the 2008 AIA conference, it holds a monthly conference call to discuss current events and actions by members concerning prenatal testing for Down syndrome. The name was chosen to reflect the mission of the participants of improving informed decision making in the prenatal testing context.

    Recent headlines make this Task Force all the more relevant. Last month, Sequenom introduced its new, highly sensitive prenatal screening test for Down syndrome in 20 cities. This new test is expected to dramatically increase the number of women who accept prenatal testing. However, as researchers of the test noted, educational materials are needed for both physicians and patients to ensure informed decision making.

    The IDM TF has played a role in developing and distributing those materials. The group has served as a sounding board for the development of the free book at; has distributed copies of "Understanding a Down Syndrome Diagnosis;" has shared with medical professionals the on-line training module,; and, promotes the National Down Syndrome Adoption Network (

    The IDM TF also serves as a conduit for grass roots advocacy on issues concerning prenatal testing. An example is the support members provided for passage of the Kennedy-Brownback-sponsored "Prenatally and Postnatally Diagnosed Conditions Awareness Act."

    If you are interested in what the future holds for our community and want to get involve in addressing the challenges we face, feel free to e-mail Mark Leach at You will be added to the monthly e-mail alert with the call in information for the next call. Calls run just over an hour and are always lively and informative, with a dose of humor to lighten things up.

  • Tue, November 08, 2011 8:55 AM | Anonymous member (Administrator)

    by Deanna Tharpe, DSAIA Executive Director

    Downtime.  Do we really have it anymore?  I read a very interesting article on that topic recently.  I guess I had not really thought about it much, but now it’s really on my mind.  The article pointed out that with our continual link to the outside world, “downtime” may become a thing of the past.  Think about it…email, texts, tweets.  They can get to us in some form or fashion at any time of the day.  We are on our laptops or we are constantly checking our smartphone.  Most of us are shackled to Facebook when at one time we had more time away from “input”.

    Teachers have been complaining about this for a long time.  Class after class after class and in between there is no time to plan.  So they are forced to spend family time at home working on lesson plans, grading papers and the like.  I had one teacher tell me that she’d love to have a couple of hours during the school day to brainstorm ways to help individual students achieve more. 

    Even with this in my data storage for years, I never made the connection that I also needed that time to brainstorm.  Going from meeting to project to phone call to email…and during each of these I am texting, checking Hootsuite, writing an article, updating the website.  When do I have time to brainstorm or take that 50,000 foot view of my organization?  Actually – the only time I’ve had lately is the shower!  Oh, you know what I’m talking about….it’s quiet, you’re relaxed and then…Boom!  An idea hits you!  You jump out with shampoo in your hair to get to a pad and paper so you can write it down before it’s gone forever.

    That is why we need downtime.  Because during those precious moments when technology cannot interfere, our brain begins to work.  It’s really an amazing tool, that noggin of ours.  And if we can just give it a little time to work things out, it will.  I know you are busy, but every once in a while you have to take a break from the world so you can help fix its problems.  So here is your homework for the week:  Allot some downtime for yourself at least 3 times and see what comes of it.  If you don’t come up with a brilliant idea, at least you got some peace and quiet.

  • Tue, November 01, 2011 11:33 AM | Anonymous member (Administrator)

    By Joe Meares, DSAIA President

    When my four kids were younger, each Easter, I would hide dozens of eggs around our house, yard and woods for them to find.

    Once they gave up, it was up to me to walk the entire course to retrieve the eggs not found or to lead them to the still-hidden treasures.

    This was logical because I’d hidden the eggs and only I knew where they all were!

    If you think of your repository as a great big yard filled with Easter eggs and in some are exactly the treasure you’re seeking, then, please remember Deanna is the one who “hid the eggs”. Deanna KNOWS where all the treasures are.

    OK, I thought of the Easter egg analogy after I asked Deanna for a pie chart with a breakdown of items in the repository and all the pretty colors reminded me of Easter eggs.

    I REALIZE there is a risk in comparing items in our repository to well-hidden eggs, but it’s just an analogy!

    I asked for the chart after visiting with several DSAIA members recently.

    A couple of things I heard:

    An E.D. was looking for something specific in the repository and couldn’t find it. She called another organization and borrowed their document. I asked Deanna to look for the same item and it turns out there are 18 examples in our inventory. This E.D. only saw one example.

    A board president asked me if Deanna was a volunteer or staff. With the belief she was a volunteer, this board president wanted to respect Deanna’s time and seldom asked for help. She also said as a volunteer herself, she doesn’t always have time to find what she needs in the repository.

    To be clear as a crystal egg-- Deanna is staff.

    Deanna’s job is to provide support for DSAIA members. That SUPPORT includes leading you to the treasure- filled eggs in the repository. After all, only Deanna knows where everything is hidden.

    We have over 800 items in our egg hunt now and it continues to grow. There has to be a limit of the categories, so, sometimes finding exactly what you want takes a little digging.

    Helping you find what you need IS Deanna’s job and it’s a service your membership in DSAIA entitles you to.

    I encourage all of you to take advantage and just ask where your golden egg is hidden.

    The colorful pie chart also shows some thin slices. That will be the grits for my next blog and I’m sure Deanna will tell me when it’s due. That too, is her job!

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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


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