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 downsyndromepregnancy.org; has distributed copies of "Understanding a Down Syndrome Diagnosis;" has shared with medical professionals the on-line training module, brighter-tomorrows.org; and, promotes the National Down Syndrome Adoption Network (www.ndsan.org).
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 firstname.lastname@example.org. 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.