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  • Tue, November 15, 2011 6:35 AM | Deanna Tharpe (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 | Deanna Tharpe (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 | Deanna Tharpe (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


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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